What's New in Pulmonary Hypertension January 2010 - April 2012 RSS Feed
RSS Location Change -- Introducing the PHA Daily Beat: News for your Health and Heart
4/12/2012

We’ve moved! This What’s New in PH feed has moved to a new location and gotten a whole new look, including a new name! Check out the PHA Daily Beat: News for your Health and Heart.

If you subscribe via RSS you must switch the URL of your feed to http://feeds.feedburner.com/PHADailyBeat. You can also now subscribe via email to our daily updates.

Visit the PHA Daily Beat

New Information About PAH Induced by Use of Dasatinib
4/11/2012

Research published in the Leukemia Research Journal shares new information about pulmonary arterial hypertension (PAH) induced by the use of dasatinib, with symptoms reversing once the drug is stopped. Read more

Traveling with Your PH Child
4/11/2012

Whether by plane, car, bus or train, traveling with pulmonary hypertension can be tricky for families. This webinar recording will give you the tips you need for a planning smooth vacations - whether it’s across the country or around town!

One father who attended the webinar thanked the presenters, Michelle Calderbank, RN, BSN, and Jennifer Wisniewski, RN, BSN, of Children's Hospital Colorado:

"It's like you are reading my mind. My daughter was diagnosed at 2 and is 11 now ... Ever since she was diagnosed, my dream has been for her to see her grandmother in Mexico ... she's never seen her. But I didn't even want to ask about traveling to Mexico."

Watch the Traveling with My PH Child recording in PHA Classroom

Early-Stage Lung Cancer Treatments Evaluated in Patients With Breathing Problems
4/11/2012

4/10/2012 (Medical Xpress) - Many patients with early-stage lung cancer have emphysema, pulmonary hypertension or other breathing problems that limit their treatment options. The study focuses on patients with the most common type of lung cancer, non-small cell lung cancer. When it is diagnosed early, the standard treatment is surgery. But the operation is especially risky for patients with poor lung function, who often have complications after surgery. Read article

First Ever Indonesian Pulmonary Hypertension Meeting Held
4/10/2012

PHA is pleased to share with you a photo from the first-ever pulmonary hypertension patient meeting in Indonesia! This meeting is the first step in establishing regular meetings for PH patients in Indonesia. This is a milestone meeting for Indonesia, a country with a population of 200 million and just one treatment. We first heard from the mother of Enzo, a little boy living with PH (pictured in the middle, holding a magnet).

Visit the Indonesian PH Group Facebook page

Brooke Gunter Raises Over $5,000 by Sharing Her Brother's Story
4/10/2012

Jake and Brooke GunterBrooke Gunter created a personal fundraising page in honor of her 18-year-old brother Jake who has pulmonary hypertension. Here is an excerpt of her story.

Jake loves to make people laugh. He is undoubtedly one of the funniest guys I know, and I guarantee most of the people that know him would agree with me. Jake is smart, in that natural, witty kind of way that everyone always wishes they could be. Jake dreams big, he has plans for himself that most would consider impossible given his condition. He is loyal and kind. Most importantly, my little brother is brave. In the two years since his diagnosis I have never heard him complain, not even once. I know Jake struggles with his disease every day, but he chooses to suffer in silence. Life has dealt him a less than ideal hand, yet he continues to joke his way through the pain; pity is unacceptable to him. This disease prohibits Jake from doing the things that any 20 year old should rightfully be able to do, from living the life that he deserves.

I created this page because I wanted to tell all of you a little bit more about this kid that I have had the privelege of getting to know for the last 20 years. I want him to know how I see him, and hopefully, through your donations and comments, he will be able to see how highly all of you think of him, as well. I want him to have no doubt that his life is worth fighting for.

Pulmonary hypertension afflicts 15 in every 1 million people. Unfortunately, Jake is one of them. There is currently NO CURE for pulmonary hypertension, and the prognosis is less than favorable. I refuse to let this disease dictate and limit my brother's life, his dreams, his humor. I originally set my fundraising goal at $1,000, but then I thought that Jake would find such a modest attempt simply unnacceptable. He'd want us to dream bigger. I know that with all of your support we can reach my new goal of $5,000. It may not buy him a new pair of lungs, but it can buy us hope.

Brooke exceeded her goal of raising $5,000. To date she has raised $5,581. Read more on Brooke's personal fundraising page

Interested in doing your own personal fundraising page? Get started

Say Thanks!
4/9/2012

PH touches the lives of many people – patients, family members, friends and dedicated medical professionals. You can acknowledge or remember the people who have touched your life with a Note of Thanks and Remembrance in the program book for PHA’s 10th International PH Conference for $25. All proceeds go toward the Conference Scholarship Fund. Notes are due May 1.

Write your thank you note today

Conference Registration Early-Bird Discount Ends Monday
4/5/2012

PHA’s 10th International PH Conference and Scientific Sessions
June 22-24, 2012
Renaissance Orlando at SeaWorld®
Orlando, Florida, U.S.A.

More than 500 PH community members have already registered for PHA’s 10th International PH Conference and Scientific Sessions, The Power of One: From a Kitchen Table to Around the World. We hope you will join them! If you haven’t registered yet, you can still take advantage of the early-bird discount of $25/person through Monday, April 9. Don’t miss out on this opportunity!

Register now

For questions about registration, please contact Registration@PHAssociation.org or 301-565-3004 x768.

Please note that the early-bird discount rate will not be extended past Monday, April 9.

PHA Leadership Working Together
4/5/2012

PHA's leadership -- the Board of Trustees, Scientific Leadership Council, and PH Professional Network Executive Committee -- met recently. PHA's President, Rino Aldrighetti, used these meetings to paint a picture of how patients, caregivers and medical professionals work together to help shape the direction of PHA. Read more on Rino's blog

Scleroderma Foundation Launches Unique Video Campaign Today
4/5/2012

4/4/2012 (MarketWatch) - WALKFORCURE.ORG is a video sharing website featuring a wall of scleroderma supporters sharing their reasons for taking part in Stepping Out to Cure Scleroderma walks and raising awareness for scleroderma in general. Supporters are asked to upload an original video and describe why they walk. Read article

PHers Shower the Community with Media Successes
4/4/2012

Thanks to the work of some very active PH awareness raisers, pulmonary hypertension has been the subject of multiple news articles around the country. Here are just a few of the media successes from the last few weeks. Each one illustrates the various ways you can share your story with reporters to raise PH awareness in your community: Joy Morgan worked with her PH doctor to educate medical professionals in a local medical magazine, Pat Harrington shared her story and urged her community to attend her PH fundraiser, and Deb Watkins piggy-backed her awareness raising efforts onto a larger story about Portland’s St. Patrick’s Day fun run. Read more about these media successes in PHANews

CuraScript and Accredo Parent Companies to Merge
4/4/2012

(The Commercial Appeal) Express Scripts has completed a $29.1 billion takeover of Medco Health Solutions. Express Scripts is the parent company for CuraScript specialty pharmacies and Medco for Accredo. For the moment you should expect to get your pulmonary hypertension medications from the specialty pharmacy you do now, but in the future expect to hear more information as the two companies merge. Read article

10-Year-Old UCLA Patient Lends Voice to Raise Awareness Of 'Adult' Lung Disease That Affects Kids Too
4/3/2012

4/2/2012 (UCLA Health) - Lucas, an up-and-coming voice-over actor who has voiced radio commercials and an animated television pilot, has narrated a 30 second public service announcement to help educate the public about how the disease affects kids. The Burbank fourth grader wants people to know that there is a huge gap in research that focuses on younger patients like him. "I want to find a cure for pulmonary hypertension. I hope my commercial helps do that," Lucas said. "It's important to me that doctors find a cure for PH so they can save thousands of lives." Read article | Watch the Video

Participate in World Pulmonary Hypertension Day: May 5, 2012
3/30/2012

The Asociación Nacional de Hipertensión Pulmonar (ANHP) has created the First World Pulmonary Hypertension Day to raise pulmonary hypertension awareness on a global scale. This event will consist of a Scientific Symposium on May 4, 2012, in Madrid, Spain, followed by the main World PH Day events, a cocktail gala and the ANHP General Assembly on May 5.

To date, World PH Day has been supported by a number of PH and related health organizations worldwide, including: PHA, PHA Europe, Sociedad Latina de HP, PHA Slovakia, PHA Japan, PHA Canada, PHA South Africa, SAPH (Saudi Arabia), PH Israel, PHA Norway, PHA Sweden, PHA Poland, FUNDAVHIP (Venezuela), PHA Hungary, PHA Latvia, EURORDIS, NORD, Federación Española de Enfermedades Raras, European Lung Foundation, American Thoracic Society, Scleroderma Foundation, Sociedad Española de Cardiología, Sociedad de Ruematología and European Respiratory Society.

Leading up to the event, PHA will be asking members of the PH community to change their Facebook status to show support and solidarity on May 5. To learn more about the event, visit the World PH Day website.

Know Your PH: Free Interactive iPad Book
3/30/2012

Know Your PH is an interactive multi-touch iPad book now available for free download on iTunes. Written by Drs. Michael Parker and David Roberts, Know Your PH is a dedicated source of vital information for pulmonary hypertension patients, as well as for families and friends of those who are facing PH. The goal of this book is to give you accessible, relevant information that will help you understand the diagnosis, evaluation, and treatment of PH. Knowing that PH can be a complex and at times frightening condition, the book is organized around patients' most frequently asked questions. To guide you in better visualizing the underlying mechanisms (pathophysiology) of related medical problems and symptoms, Know Your PH offers a series of interactive, animated diagrams. Also embedded in this resource are videos and audio clips that clarify key concepts and highlight important information.

Download the free interactive Know Your PH iPad book

Kim Ford & Conchita Watson Lead Another Successful Silver Spring Support Group Meeting
3/29/2012

Kim Ford and Conchita WatsonThe local Silver Spring, Md., PH support group met recently in PHA's offices. The 20 PHers in attendance were treated to a talk by Jaclyn Brubeck, RN, BSN, about diagnosis and treatment of PAH, and they learned about programs and services for patients and caregivers from PHA staff. The group is geared up to educate their Members of Congress on PHA's National Call-In Day on April 26.

Live in the D.C. metro area? You can meet other PHers like group leaders Kim Ford and Conchita Watson (pictured right). Visit the Silver Spring support group website to learn more

Researchers Identify Pathway as New Target for Scleroderma Therapy
3/29/2012

(News-Medical.net) A genetic pathway previously known for its role in embryonic development and cancer has been identified as a target for systemic sclerosis, or scleroderma, therapy. The finding, discovered by a cross-disciplinary team led by John Varga, MD, John and Nancy Hughes Distinguished Professor of Rheumatology at Northwestern University Feinberg School of Medicine, was recently published in the journal Arthritis & Rheumatism. Read more

Get Your PH Banner for Facebook Timeline
3/28/2012

If you are on Facebook and you haven't already moved to the new timeline layout, you will be forced to as of this Friday, March 30. At the top of your page will be a space to have a large banner image called a "cover." We have created a number of cover images for you to use to spread pulmonary hypertension awareness in our PHA Facebook Banners photo album. You can choose from five options.

Editor's favorite:
Hope is in the palm of our hands. Pulmonary Hypertension Association

View and download PHA Facebook Banners for your Facebook timeline cover

Importance of Having a Pulmonary Hypertension Friend (or PHriend)
3/28/2012

Kiara Tatum recently wrote on the Generation Hope blog about the importance of having a PHriend who can understand what you are going through with your pulmonary hypertension and how it affects your life. Read Kiara's blog post

Lower Dose of Thrombolytics can Treat Moderate Pulmonary Embolism
3/28/2012

(News-Medical) - Pulmonary embolism is estimated to cause over 100,000 deaths each year in the U.S. Although thrombolytics, or "clot-buster" drugs, are currently reserved to treat only the most severe cases of pulmonary embolism, new data suggest that when used at lower doses, these drugs are also safe and effective for more common, moderate cases of pulmonary embolism, according to research presented today at the American College of Cardiology's 61st Annual Scientific Session. Read article

Giving Pulmonary Hypertension a Voice on Rare Disease Day
3/27/2012

Katie Kroner, PHA's Director of Advocacy and Awareness, and Nicole Cooper, PH patient, raise PH awareness on Capitol Hill.February 29 was Rare Disease Day – a global effort to raise awareness of rare diseases and the need for more research and treatments. PHers joined in the effort by hosting awareness tables, spreading the word on Facebook and even speaking out on Capitol Hill. PH community members and PHA staff represented the PH community at a variety of events in Washington, D.C.

Read the highlights about Rare Disease Day activities in the PH community

Vanity License Plate Raises Awareness for Pulmonary Hypertension and Organ Donation
3/27/2012

Lisa Garnett, whose daughter has pulmonary hypertension, is using her license plate to raise awareness for organ donation and pulmonary hypertension. She purchased a Donate Life plate and "CUREPH" as her plate number. Check it out below!

CURE PH license plate

Website Discoveries: "Empowered by Hope: Understanding PH" Video
3/23/2012

Understanding PH DVDThings I Found on PHA's Website
by Kathryn Frix

I have found a great way for you to help people in your life understand pulmonary hypertension. It was over a dozen years ago, but it is still clear in my mind how I replied when my cousin told me he finally had a diagnosis for his distressing symptoms - pulmonary hypertension. I asked, "What is pulmonary hypertension?"

Read more about PHA's Understanding Pulmonary Hypertension video

Spur a Cure for PH in Pheonix this Saturday
3/23/2012

The organizers of this Saturday's Spur a Cure for PH country-western themed event in Pheonix were in their local paper raising awareness for pulmonary hypertension and promoting their special event. Read the article | Visit the Spur a Cure for PH website

Link Found Between Migraines and Heart Condition
3/23/2012

3/20/2012 (News 4 Jax) - New research shows a link between people who get migraines and the common congenital heart condition atrial septal defect, or ASD. "Those patients have been found to not only have a higher incidence of this hole, but actually in having the problems associated with the hole...whether is be a stroke, pulmonary hypertension, arrhythmias, shortness of breath," Splaver said. Read article

What's in Store for Families of PH Kids at Conference
3/21/2012

“I will be taking my family to Orlando... There is no other venue at which a family dealing with pulmonary hypertension can receive the same kind of support, emotional connection and education.” – Christina Doak, Spring 2012 Pathlight (pictured below with family in 2006)

If a young person in your family has PH, we hope you’ll be joining Christina and her family at PHA’s International PH Conference. The Conference may be your only opportunity to meet other families like yours. PHA worked closely with our Parents Advisory Board to identify the best ways to maximize this opportunity for families of PH kids.

Read more about programming for families of PH kids in PHA's Conference Blog

NIH Launches New Genetic Testing Registry
3/21/2012

The Genetic Testing Registry (GTR) provides a central location for voluntary submission of genetic test information by providers. The scope includes the test's purpose, methodology, validity, evidence of the test's usefulness, and laboratory contacts and credentials. The overarching goal of the GTR is to advance the public health and research into the genetic basis of health and disease. Visit the NIH Genetic Testing Registry website

No PH Support Group in Town? Pick Up the Phone!
3/20/2012

Want to chat with another patient? Can't make it out to a local support group meeting? A support group is only a phone call away with PHA’s monthly Patient Telephone Support Group. It always helps to have someone else to talk to, someone who understands what it’s like having pulmonary hypertension. Our patient telephone support group makes it easier to participate in support groups regardless of your work hours, distance or health concerns.

PHA’s Monthly Patient Telephone Support Group

When: Thursday, March 22, 8 p.m. ET

Where: On the phone and online. The web portion is optional. You must dial in to participate. Details will be provided after you register.

Register now

For assistance: Debbie, 301-565-3004 x755

Whittier Woman Receives Miracle and Gives Back
3/20/2012

3/14/2012 (Whittier Daily News) - Fifteen years after only being given five years to live, Whittier's Monica Penaranda, 32, who was diagnosed with pulmonary hypertension, is now giving back. She went to the first Pulmonary Hypertension Walk 11 years ago where family members pushed her in a wheelchair. "I was able to physically finish my first walk in November 2011 at Stanford University," Penaranda said. Penaranda had a vasodilator implanted in her stomach a month ago. The pump gives her medication that dilates vessels in her heart and lungs. Read article

Scleroderma Won’t Get Best of Coloradan
3/20/2012

3/15/2012 (Our colorado News) - Ray Woolf spent 30 years of his life not knowing what was wrong with him. Finally, four years ago, at age 47, he was diagnosed with a rare form of a rare auto-immune disease known as linear scleroderma. Read article

UF Researchers Target 'Traitor Proteins'
3/20/2012

3/15/2012 (Suncoast News) - After conducting what they say is a first-of-its-kind inventory, researchers at the University of Florida have concluded that roughly one American out of 10 has "traitor proteins" thought to cause lupus, scleroderma or other autoimmune disorders in their blood. Read article

Caregiver Webinar: Recognizing and Coping with Depression
3/16/2012

Wednesday, March 21, 1:30 p.m. ET/10:30 a.m. PT

How do you know when you or someone you love is feeling blue versus feeling depressed? This webinar will focus on recognizing the signs of depression, as well as providing strategies for coping with depression, sadness and stress.

Learn more and register

PH Treatments Update!
3/15/2012

PH Treatments: What’s On the Horizon
Friday, March 23, 2:00 p.m. ET
Webinar (Phone AND Internet)

It is an exciting time for PAH research. Over the past 13 years, many PAH therapies have been approved by the FDA! In this webinar, listen as Dr. Michael McGoon, Mayo Clinic, discusses the new treatments available and treatments currently in the pipeline.

REGISTER NOW: https://cc.readytalk.com/r/rhepb3cfur9q

Toddler Gets "Four-Legged Lifeline"
3/14/2012

3/11/2012 (MyFoxAtlanta) - It is a big burden for a Loganville toddler to drag an oxygen tank around just to be able to breathe, but now that 3-year-old girl is getting some help from what her parents call a "four-legged lifeline." Read article and watch the news video

Dr. Zannos Grekkos Under Criminal Investigation for Stem Cell Therapy
3/13/2012

(3/8/12) The Florida Surgeon General has issued an emergency suspension of the license of Dr. Zannos Grekos for providing a stem cell treatment to a patient contrary to previous restrictions placed on his license. The patient died during the treatment. Read news coverage: CNN | NBC 2 | Marco Eagle

PHA’s Scientific Leadership Council has offered guidance on stem cell treatments for this point in their scientific development. Read PHA's Scientific Leadership Council Statement and Fact Sheet on Stem Cell Therapy and Pumonary Hypertension

Playing the Waiting Game - Congenital Diaphragmatic Hernia
3/13/2012

3/10/2012 (WNDU) - Most babies have less than a 50% chance of surviving a condition that’s diagnosed before they’re even born, but now delaying necessary surgery to treat the problem is greatly improving the odds. Robby had a congenital diaphragmatic hernia, a hole in the diaphragm causing the organs to crowd up into the chest, so the lungs can’t develop. Read article & watch news video

Chinese Cultural Center Puckers Up for PH
3/12/2012

The ISEEK PH Cultural Center in China organized an awareness day around the blue lips campaign. Ziye Li, Executive Director of ISEEK, reports on the event:

We organized a public-interest activity regarding “puckerup4ph” on Mar. 4, which was the first public promotion in China for PH. It was really effective. Mr. Chen Jingyu, a lung transplant expert as well as deputy to National People’s Congress, and Ms. Yong Mei, a famous Chinese actress, attended our event to popularize common knowledge about PH and blue lips among the masses. So many people were attracted by us and enthusiastically joined in.

Chinese ISEEK event

Visit the ISEEK website (Chinese)

Pediatric Webinar Series: Traveling with My PH Child
3/12/2012

Thursday, March 15, 8:30 p.m. ET/5:30 p.m. PT

Whether by plane, car, bus or train, traveling with PH can be tricky for families. This webinar will provide you the tips you need for planning smooth vacations, whether it’s across the country or around town!

Register now

New Web Section Just for Teens!
3/9/2012

PHA has just launched a brand new section of its website especially for teens with PH. Check it out!

Visit the PH Teens section

Proud Peacocks: Gala Raises Funds and Awareness for Pulmonary Hypertension
3/8/2012

On Saturday, February 18, the Tobias family hosted a peacock-themed gala in honor of their daughter, Katie (pictured center), who was diagnosed with pulmonary hypertension in 2006. Over 170 guests gathered to dance, eat, and show their support for pulmonary hypertension research and programming.

Katie, who turned 25 last month, is a writer and artist. One of her original pieces of artwork was raffled off during the event. Check out some of Katie's artwork on her Journeys page.

New Brochure Provides Life-Saving Information for EMTs
3/7/2012

First responders (EMTs)Nobody wants a medical emergency, but just in case, there’s a new brochure you can give to Emergency Medical Technicians (EMTs). PHA’s new Emergency Medical Services Brochure explains how to best provide emergency care for you. Just fill in the blanks with your personal pulmonary hypertension treatment information.

Order a free copy

Share this Dynamic Message about Kids and PH
3/6/2012

We thought you’d like to see this 30 second video on pulmonary hypertension research for children. The video was developed by PH parent Steve Van Wormer and his son who has PH, fourth grader Lucas, does the voice over. If you like it, please pass it on to help us get the word out.

You can share the YouTube video (http://youtu.be/P2JVe1XhGTw) on your Facebook page or through Twitter, and you can get an email sent to you that you can forward to your friends and family on our website at www.PHAssociation.org/PediatricResearchEmail. Also, the link at the end of the video will give you a lot more information on the importance of PH research and building a medical structure to treat kids.

Watch the video!

'Breathtaking' Campaign Launched to Raise Awareness of Deadly Lung Disease, Pulmonary Hypertension, on Rare Disease Day
3/2/2012

2/29/2012 - (MarketWatch) -  In the news release, "'Breathtaking' Campaign Launched to Raise Awareness of Deadly Lung Disease, Pulmonary Hypertension, on Rare Disease Day" issued on 28 Feb 2012 23:01 GMT, by Pulmonary Hypertension Association Europe and Bayer HealthCare over PR Newswire, we are advised by a representative of the company that a new link fits into the following passage of text: "Footage of the 'Breathtaking' campaign events will be available at the following link at 17.30 CET on 29th February. http://bit.ly/z1Yn3R".  Read article

Keep Up with Life, Pulmonary Hypertension and All
3/1/2012

“For me, living with PH means I’m always planning, always looking for the easiest way to get things done, from simple things like picking up laundry or cleaning the kitchen, to putting on special events at work or planning a vacation.” – Val, PH patient

Just because you have pulmonary hypertension doesn’t mean you need to give up doing what you love. PHA has assembled some of the best ideas from Val and others living with PH in the newly updated Day-to-Day Living section. With tips on everything from home improvements to staying active when you’re low on energy, you’re bound to learn something new.

For example, just because you don't have the energy to keep up with your hobbies like you used to doesn't mean you need to give them up entirely. If you have a green thumb but you can't keep up with your large garden, scale back. Plant a smaller garden or install window boxes.

Find more day-to-day living with pulmonary hypertension tips

Pulmonary Hypertension Glossary Now Online
2/29/2012

PHA's Glossary of Pulmonary Hypertension Terms from Pulmonary Hypertension: A Patient's Survival Guide (4th ed) is now available online! It includes definitions of common PH terms as well as links to additional resources.

View Glossary of PH Terms | Order a Survival Guide

PH Research and Education Act Gets a Wave of Congressional Support
2/28/2012

Dawn Smith at the 2011 Congressional LuncheonThanks to the hard work of several PH advocates, the following Members of Congress became official co-sponsors of the Tom Lantos PH Research and Education Act last month:

  • Rep. Elijah Cummings (MD-7)
  • Rep. Steven LaTourette (OH-14)
  • Rep. Todd Platts (PA-19)
  • Rep. David Price (NC-4)
  • Rep. Tim Ryan (OH-17)
  • Rep. Louise Slaughter (NY-28)

The following have expressed interest in co-sponsoring and are waiting for their names to be added to the bill:

  • Rep. Jason Altmire (PA-4)
  • Rep. Jesse Jackson Jr. (IL-2)
  • Rep. Gregory Meeks (NY-6)
  • Rep Michael Michaud (ME-2)
  • Rep. Chris Murphy (CT-5)

Each of these representatives took action because advocates shared their PH experience and requested co-sponsorship of a bill that will improve their lives. According to Sara Mabry, the Legislative Aide to Sen. Robert Casey (D-PA), sometimes the easiest way to get a Member of Congress to co-sponsor the PH Research and Education Act is to simply ask them to do so: “There are literally tens of thousands of bills introduced each Congress. The easiest way to figure out which ones we need to pay attention to is by looking at the mail we’re getting and the requests constituents make. If someone took the time to write or visit about a bill, then that means it’s important to them,” says Sara.

The PH Research and Education Act is the only bill in Congress that is solely focused on improving the lives of PH patients. The bill would increase PH education and awareness for the public and medical professionals, and also encourage collaboration among PH researchers working to create the newest PH treatments and, one day, a cure.

Have you asked your Member of Congress to co-sponsor? Send your Members of Congress an email urging them to co-sponsor the Tom Lantos PH Research and Education Act. Get started today!

Then, contact Elisabeth Williams at 301-565-3004 x753 or Advocacy@PHAssociation.org

State of PHA Address Available to Watch
2/28/2012

A recording of the recent webinar “State of PHA – An Annual Update from PHA President Rino Aldrighetti” is now available in PHA Classroom. This webinar discusses the current state of PHA, the growth of the PH community and PHA’s recent accomplishments and goals for the new year.

Watch State of PHA recording

Support Group Presents Proclamation to Univ. of Minn. Medical Team
2/27/2012

The Minnesota Twin Cities PH Support Group successfully obtained a proclamation from Governor Mark Dayton declaring November Pulmonary Hypertension Awareness Month. Recently, the group presented the proclamation to the medical team at the University of Minnesota (pictured below) in memory of Mallory Brooke Hicks, one of their patients. Read below what Lois Piper, Mallory’s mother, had to say about the occasion.

I just wanted to share with you that we presented a beautifully framed proclamation from Governor Mark Dayton declaring November as PH Awareness Month in Minnesota to Dr. Marc Pritzker and Dr. Monica Colvin-Adams, and the entire PH team at the University of Minnesota Hospital today. We made the presentation in memory of Mallory Brooke Hicks, who was diagnosed in September of 2010 with PH and lost her battle a few, brief months later. Under the care of Dr. Pritzker and the entire PH team, Mallory was treated with kindness, respect, and dignity. Because of the outstanding care she received, she was able to face PH with grace and gumption in the small number of months she had in her battle.

It is to the credit of the care of her physicians, and the support of the Pulmonary Hypertension Association that saw her through diagnosis and treatment. It is in her memory and her steadfast commitment to understanding PH, her desire to raise awareness and early detection of the disease within the medical community, and finding a cure that we as part of the PHA community presented this proclamation.

The proclamation was presented by Brandon Hicks, Mallory's 7-year-old son, and will hang in prominence, giving hope to all newly diagnosed patients at the clinic.

It was a great experience and a good day to advance the cause of awareness raising.

Lois Piper

Read more about the event on the MN Twin Cities PH Support Group blog

Living With Pulmonary Arterial Hypertension
2/27/2012

2/25/2012 (The Ledger) - Increasing tiredness and passing out without apparent cause sent Joy Morgan and Ken Hintz looking for answers. Now they live on multiple expensive medications taken around the clock. Each has much less energy than their healthy outward appearances suggest, which can bring stares or worse when they park in handicapped slots. They have pulmonary arterial hypertension. Read article

Let’s break PHA’s Fun Walk Record
2/24/2012


Funwalk LogoDid you know we had 18 different volunteer-organized fun walks or fun runs in 2011? Will 2012 be a record-breaking year for the PH community? Let’s make it happen! With a brand new logo for our Fun Walks for a Cure, new banners for your event, and updated awareness-raising materials, we are ready to support your cause. Contact Events@PHAssociation.org or 301-565-3004 x765 for more information. In addition to Fun Walks, we offer the Six Minute Marathon, a smaller-scale fundraising event. Learn more at www.PHAssociation.org/6MM.

 

Educational Opportunity for PH Patients and Families
2/23/2012

5th Neonatal and Childhood Pulmonary Vascular Disease Conference

March 9-10, 2012
San Francisco, California

The University of California, San Francisco (UCSF) presents the 5th Annual International Neonatal & Childhood Pulmonary Vascular Disease. The conference will feature presentations from specialists in the field on a variety of topics, as well as a series for PH families in which patients and parents will share their personal PH journeys. The conference will also include a breakout session for families focusing on the unique challenges faced by families dealing with this illness.

Although this conference is primarily developed for medical professionals, it will be an excellent opportunity for PH families to learn, share and connect with each other. The cost of registration for patients, family members and caregivers is $10/person.

View full programming information and to register for the conference

PHA Webinar: Creativity and Healing Through Blogging
2/22/2012

Creativity and Healing Through Blogging
Thursday, March 8, 6 p.m. ET/3 p.m. PT
Webinar (Phone AND Internet)

Medical research links creativity with reduced symptoms and improved health. In this second in the creativity webinar series, active bloggers and PH patients Leigh McGowan and Colleen Schnell discuss their experiences with blogging as a form of creative self-expression. Learn blogging tips and tricks and find out more about the online PH blogging community. This webinar also includes open time for attendees to ask questions and share their own blogging experiences with the group.

Register Now

Better Sleep Week: Signs, Symptoms and Dangers of Sleep Apnea
2/22/2012

2/21/2012 (KVDR Fox31 Denver) - Debra Messenger knew something was wrong. She was strangely sleepy. She fell asleep at a work conference, at a dinner party and even behind the wheel. She knew she snored at night, and she had a headache every morning when she woke up. Read article and watch the news video

Stand Up with the Rare Disease Community Feb. 29
2/21/2012

Rare Disease Day - February 29, 2012Did you know 30 million Americans are living with rare diseases? Alone we are rare, but together we are strong. Celebrate a rare day by joining World Rare Disease Day on Feb. 29. Send a photo, contact the press, join an event and more.

Add your voice

Researchers Uncover New Advancements in Cardiovascular Medicine
2/21/2012

(Medical Xpress) - With the month of February designated as Heart Health Month, physician-researchers in the Division of Cardiology at the Los Angeles Biomedical Research Institute (LA BioMed) – Dr. Matthew Budoff and Dr. Ronald Oudiz – continue to pave the way with their efforts to develop treatments and therapies for conditions affecting the heart, and to help improve overall heart health. "As the nation focuses on heart health this month, we continue to aggressively find ways to decrease the chances of heart failure – and subsequently death - for patients with pulmonary hypertension, a rare disorder that results in progressive heart failure and death," said Dr. Oudiz. Read article

Vicious Cycle of Sleep Apnea and Obesity in Kids
2/21/2012

2/17/2012 (CNN Health) - The classic pediatric sleep apnea patient is a skinny 6-year-old with chronic congestion and dark circles under his eyes. We still see many kids in the sleep center who match this profile, but over the past 10 years, a new clinical picture has emerged. Coinciding with the dramatic rise in childhood obesity, there is a clear change in our younger patients. Not only do obese kids with OSA have a similar clinical presentation as adults, they unfortunately can have the same adverse outcomes if the sleep apnea is not treated. We are seeing pre-teens who have what we use to think of as adult diseases such as high blood pressure, pulmonary hypertension, heart disease and congestive heart failure. Read article

PHA Office Closed Monday, Feb. 20 for Holiday
2/17/2012

The PHA Office will be closed Monday, Feb. 20, for the Presidents' Day holiday.

No PH Support Group in Town? Pick Up the Phone!
2/17/2012

Want to chat with another patient? Can't make it out to a local support group meeting? A support group is only a phone call away with PHA’s monthly Patient Telephone Support Group. It always helps to have someone else to talk to, someone who understands what it’s like having PH. Our patient telephone support group makes it easier to participate in support groups regardless of your work hours, distance or health concerns.

PHA’s Monthly Patient Telephone Support Group

When: Thursday, Feb. 23, 8 p.m. ET

Where: On the phone and online. The web portion is optional. You must dial in to participate. Details will be provided after you register.

Register

For assistance: Debbie, 301-565-3004 x755

Annual State of PHA Address Available Online
2/15/2012

PHA President Rino AldrighettiRecently PHA's President, Rino Aldrighetti, gave his annual State of PHA address. The cause continues to move forward in many directions and 2011 was a year of continuing strength in the fight against pulmonary hypertension (PH) through research, education, advocacy and awareness. Learn more about our strides in 2011 and goals for the new year by watching the webinar recording.

Study: Older Adults with Scleroderma More Likely Have PH
2/14/2012

(The Journal of Rheumatology ) - Although patients who develop systemic sclerosis later in life may express the entire clinical spectrum of disease, we hypothesize that patients with late-age onset SSc incur a different risk for specific organ manifestations of disease compared to those with early-age onset SSc. Read article

Know Your Meds In & Out
2/13/2012

PillsPeople living with pulmonary hypertension (PH) take a lot of medications to help manage their disease, prevent the disease from worsening and treat the side effects from PH drugs. Taking ownership of your health and medication regimen is the most important step in preventing drug mishaps.

For starters, professionals recommend establishing a "ringleader" on your medical team. For most PH patients, the ringleader is your PH physician. PH is different from other diseases in many ways, especially when it comes to medications. Your ringleader is the physician who possesses the greatest overall knowledge of your condition(s) and treatments.

Visit the newly updated Health and Medication Management section to learn about taking charge of your health, drug interactions, catheter care, and transitioning medications.

PH Patient in the Spotlight on CNN en Español
2/13/2012

Migdalia Denis on CNN en EspañolMigdalia Denis, a pulmonary hypertension patient living in Florida, has taken a strong role in recent years in the Spanish-speaking PH community. In December she appeared on CNN en Español to talk about living with pulmonary hypertension.

Recognizing Pulmonary Hypertension
2/13/2012

2/10/2012 (CBS Detroit) - Pulmonary hypertension — it’s a disease which affects women four times more often than men. That’s according to Pulmonologist Ghulam Saydain at the Detroit Medical Center’s Detroit Receiving Hospital. Read article and listen to the interview with Dr. Saydain

Staying Active with PH Webinar Thursday
2/10/2012

Life After Diagnosis: Staying Active with Pulmonary Hypertension
Thursday, February 16, 12:00 p.m. ET
Webinar (Phone AND Internet)

After diagnosis, many patients experience difficulties adjusting to a changing lifestyle. Despite these challenges, patients can find ways to stay active, whether that be through exercising, advocacy or being with friends and family. During this session, hear from medical professionals and patients about the different ways you can stay active with pulmonary hypertension and how to maintain energy to continue doing the things you love.

Speakers:

  • Abby Poms, RRT
  • Rebecca H. Crouch, PT, DPT, CCS, FAACVPR
  • Hannah Lahmeyer, PH patient
  • Melanie Kozak, PH patient

Register now

Penn. State Rep. Keith Gillespie Puts Spotlight on PH
2/9/2012

Michael McAdams, Penn. State Rep. Keith Gillespi, Dr. Dimitriy ZubkusPenn. State Rep. Keith Gillespie interviewed PH patient and York PH Support Group Leader Michael McAdams and Dr. Dmitriy Zubkus, York Hospital Pulmonary Hypertension Program Director, for his 30 minute online legislative program. They talked about pulmonary hypertension, barriers to diagnosis, Michael’s personal journey with PH and his local support group.

Over the last two years, Michael has actively advocated to State Rep. Gillespie about the need for more PH research and education. Michael asked him to declare November PH Awareness Month and last year hosted State Rep. Gillespie at a support group meeting (pictured right).

Pledge to Give the Gift of Life this Valentine’s Day
2/9/2012

Feb. 14 is National Organ Donation Day. More than 112,000 Americans, including pulmonary hypertension patients, are waiting for life-saving organ transplants.


Learn more and spread the word about organ donation | Learn more about PHA's transplant resources

Studies Shed New Light on how Nitric Oxide is Produced
2/8/2012

1/20/2012 (Vanderbilt University Medical Center) - Studies that started as part of an exploratory collaboration for Judy Aschner, M.D., took an unexpected turn and have led to a whole new understanding of how nitric oxide — an important signaling molecule in the body — is produced. “I think we’re on the cusp of something that could change the face of how we treat infants at risk for chronic lung disease or with chronic forms of pulmonary hypertension,” Aschner said. Read article

Support Group Leader Michael Rivera Raises Awareness in His Community
2/7/2012

Michael Rivera is on an awareness raising roll! In November, Michael spoke to a local newspaper reporter about pulmonary hypertension, his wife who has PH, and the new support group he founded in Corpus Christi. Recently, Michael appeared in the news again -- this time in an interview on his local NBC station. Watch his interview online

All of this news coverage has resulted in connecting at least one patient to the PH community. Juanita Garza began attending Michael's support group after she saw Michael in the news. Now, she regularly attends Michael's support group meetings and is looking forward to attending PHA's Conference in June for the first time.

Way to go Michael!

Rita Goes to Conference ... For 7th Time
2/3/2012

Rita Orth and PHA Volunteer Services Director Debbie CastroPHA Conference blogger Diane Greenhalgh interviewed PHer Rita Orth (pictured right on left) yesterday and you can listen to the interview online. Rita has attended six PHA Conferences and is planning for her 7th in June. Listen to what Rita had to say about what Conference is like. In sum, "It's amazing!"

PHer Doug Taylor on TV
2/1/2012

PHer Doug Taylor was interviewed on his local NBC 10 television station WISTV about pulmonary hypertension. Watch the interview

Enter the Plush Naming Contest
1/31/2012

Calling kids of all ages! PHA’s new plush will be making his debut in our online store in the upcoming weeks, but we don’t know what to call him. You can help give him a name by submitting your ideas by Feb. 10. If we select your entry, we will send you a free “PHriend.”

Submit your ideas

Annual State of PHA Address Next Week
1/30/2012

Rino AldrighettiState of PHA - An Annual Update from PHA President Rino Aldrighetti
Monday, February 6, 2:00 p.m. ET
Webinar (Phone AND Internet)

The cause continues to move forward in many directions and 2011 was a year of continuing strength in the fight against PH through research, education, advocacy and awareness. In this webinar, join PHA's President, Rino Aldrighetti, as he discusses the current state of PHA and the growth of the PH community. He will also review PHA's recent accomplishments and goals for the new year.

Register now

FDA Warns About Stem Cell Claims
1/27/2012

(FDA) - FDA cautions consumers to make sure that any stem cell treatment they are considering has been approved by FDA or is being studied under a clinical investigation that has been submitted to and allowed to proceed by FDA. Read article

Also, recently 60 Minutes did a report called "Stem Cell Fraud: a 60 Minutes investigation" that you can watch online.

Take Action on Your PH Health Coverage
1/26/2012

You are Essential! Demand Healthcare Coverage That Meets Your Needs
Healthcare reform may seem like old news, but for the PH community things are just getting started.

What's up?
The U.S. Department of Health and Human Services (HHS) is currently working to define “essential health benefits.” Once they’re defined, essential health benefits will set the minimum requirements for affordable health insurance plans offered to individuals and businesses as a result of the Patient Protection and Affordable Care Act.

This is good for the PH community, so what’s the problem?
HHS recently issued a bulletin that outlines how it will define the “essential health benefits” package. While the bulletin includes many proposals that will help the PH community, it does not offer enough protection for people with chronic diseases. It lacks national oversight in defining what is essential, leaving it to the states. Furthermore, HHS wants to allow health plans to offer only one brand of prescription medication per class. For PHers using the new health insurance option, this may limit access to the unique combination of drugs they need. Read the bulletin

How can I make a difference?
Read and sign an online petition, created by The AIDS Institute and National Alliance on Mental Illness, which will be submitted directly to HHS Secretary Kathleen Sebelius. PHA has signed on, and, if we get enough signatures, we can make a difference before it’s too late. Your actions now can make a difference, for you and others, when the essential health benefits become effective in 2014. Sign the online petition

Lantos Community Service Award Deadline is Tomorrow
1/26/2012

Your ideas for projects to raise awareness, advocate or expand services to the PH community can still be considered for a Tom Lantos Innovation in Community Service Award – but only if you submit the application by Jan. 27. The application, guidelines for applying and examples of past Lantos Award projects are all online so check them out.

Contact Mollie Katz with questions about the application process – MollieK@PHAssociation.org or 240-585-0774.

A Review of Inhaled Nitric Oxide in the Hypoxic Newborn
1/25/2012

(RT Magazine) - Inhaled nitric oxide (iNO) is a form of therapy utilized by respiratory care practitioners in the treatment of a variety of pulmonary conditions, such as acute respiratory distress syndrome, pulmonary thromboembolism, status post cardiopulmonary bypass, and lung transplantation. Prior to the initiation of iNO therapy, practitioners should be well versed in current recommendations for the administration of iNO. Incorrect administration of iNO therapy may potentially cause a wide array of side effects RCPs should be aware of and recognize. Read article

Annette Markin, 55, Gave all to Kids
1/25/2012

1/7/2012 (Omaha.com) - For Annette Markin, it was all about the kids — her sons, her pupils, hospitalized youngsters, all children. Annette taught for 25-plus years, most of them in first-grade classrooms. Markin died Dec. 30 at her Omaha home from complications of pulmonary hypertension. She was 55. Read article

Mariposa News (PDF)
1/24/2012

Read the winter issue of Mariposa News - The Newsletter of PHA Europe.

Opera Singer Awaiting Second Double Lung Transplant Inspires Awareness
1/24/2012

1/20/2012 (WKYC) - She's performed in some of the most prestigious opera houses in the world, but since Christmas Eve, Charity Tillemann-Dick has been waiting for her second double lung transplant at Cleveland Clinic. Pulmonary Hypertension required the opera singer to undergo a double lung transplant in 2009. Read article and watch the video

Essay Winners Talk of Struggle to Give Care, Get Care With Cost in Mind
1/24/2012

1/19/2012 (Boston.com) - Four winners have been selected in the Cost of Care essay contest aimed at promoting awareness among patients and providers about how much health care costs. Among the winners was Dr. Andrew Schutzbank cq, a doctor at Beth Israel Deaconess Medical Center, who wrote about a patient in her 70s who could not be discharged from an expensive cardiac care unit because she was taking a drug for pulmonary hypertension that costs $1,400 when a person is inpatient but less as an outpatient. Read article

PHer Wins Essay Contest and Donation to PHA
1/23/2012

PHer Tom Hamilton sent us the below information about how he recently won an essay contest about his favorite charity, us! Check it out!

Great News! In December, I entered a sweepstakes given by the PayPal Advantage Program. In order to enter the contest you had to write a short essay on your favorite charity and why it is your favorite charity. From that point, the winners were randomly selected from the entries received. Naturally, I chose PHA for all the great things they do and I ended up being a winner of a $250 donation to PHA's PayPal account! Just thought it was really cool and wanted to share the good news.
--Tom Hamilton

Here is his entry:

My favorite charity is the Pulmonary Hypertension Association (PHA). Pulmonary hypertension is a rare disease that affects mainly women and children. Pulmonary hypertension is, put simply, high blood pressure in the lungs caused my narrowing of the veins and arteries. There is no cure and it is terminal. There are many promising treatments and people are living longer and longer because of the treatments. The only other option is a lung transplant. I have pulmonary hypertension and have been approved for a double lung transplant. I am a 47 year old male. The main reason I like the charity so much is that they provide research and are a great help to the patients. I donate a percentage of some of my auctions to this charity and others. The reason I donate to PHA is that I go to my clinic and see patients 11 or 12 years old that are facing lung transplant. I know patients that are just little kids with pumps that put medication straight into their heart. I have meet brother and sister patients who have had to grow up with this terrible disease and I have seen the people in my support group pass away expectedly and unexpectedly. I donate to this charity for the generations that will come after me so that they may have a cure.

Read more stories about people who have donated to PHA

Mary Svikhart Raises PH Awareness at Healthcare Event
1/18/2012

Mary Svikhart, a Pennsylvanian woman with pulmonary hypertension, recently attended an event to promote better healthcare coverage and was featured in The Evening Sun's story about the event. Thank you, Mary, for sharing the story on the PHAware email group.

Read Mary's story in The Evening Sun | Get involved with the PHAware Campaign

Walking and Beating: A NYPD Cop and PH
1/18/2012

(Caring Voice Coalition) - Excerpt: "I eventually went back to my normal duties, but as the years moved on I began to feel sluggish, I would tire easily, and I began to have difficulty breathing. I developed a loud cough that I couldn’t seem to get rid of.  My normal routine became a daily challenge. I would get ready for work, head out the door, and have to grab a wall as I struggled to catch my breath." Read article and watch video

PHer Vlogs (Video blog) on Tips for College
1/17/2012

Check out this vlog (video blog) on tips for college when you have a chronic disease by Sean Wyman, an active member of the PHA community.

 

Webinar Tomorrow: Making a Difference in the PH Community Through a Lantos Award
1/17/2012

Make a Difference in the PH Community: How to Apply for a Lantos Community Service Award

Live E-Learning Event
Wednesday, January 18
8:00 p.m. ET

You can help the PH community breathe a little easier! Do you see a challenge in the PH community and have an idea for how to solve it? A Lantos Community Service Award can provide you with money and support to make your idea a reality.

For example, when Katie Grace Goebner began IV treatment for her PH at age 5, she needed a bag for her pump. Her mom's search for a child-appropriate bag led to a search for something that would make living with PH easier for young PHers everywhere and eventually to a Lantos Community Service Award.

Learn more about how to get support for your idea during this live webinar with PHA staff. Award winners may even receive a $1,000 scholarship for PHA's International PH Conference!

Register now | Learn more about the Lantos Community Service Awards

Conference Registration is Open!
1/13/2012

PHA’s 10th International PH Conference and Scientific Sessions brings together patients, family members and medical professionals from around the globe, making it the largest PH community gathering in the world. Highlights include networking opportunities, patient education and dedicated education sessions for medical professionals. Register now and receive an early-bird discount of $25.

Learn more and register | Read the Conference blog

Pulmonary Hypertension Registry IDs Features of Pediatric PH
1/13/2012

1/11/2012 (Doctors Lounge) - An analysis of data from the Tracking Outcomes and Practice in Pediatric Pulmonary Hypertension registry has identified clinical features specific to the care of children with pulmonary hypertension, according to research published online Jan. 11 in The Lancet. Read article

Rare Disease close-up: Pulmonary Arterial Hypertension
1/12/2012

(Catalyst) - Pulmonary hypertension, or PH, is high blood pressure in the arteries of the lungs that can lead to heart failure. The Pulmonary Hypertension Association (PHA) provided this whitepaper on Pulmonary Arterial Hypertension: Recommendations for Improving Patient Outcomes. Read article and download the whitepaper

Pulmonary Pressure Prognostic in Heart Failure
1/12/2012

1/10/2012 (medpage Today) - Pulmonary artery systolic pressure is not only a strong predictor of death in heart failure patients, but also provides prognostic information independent of known predictors of outcomes, according the results of a community-based study. Read article

Montana Hope Project Sending Young PH Patient to Disney World
1/12/2012

1/5/2012 (Missoulian) - The 12 students in Mrs. Heyer's second-grade classroom at Clinton Elementary School knew something was up Thursday afternoon. A rather large crowd had filed into their class around 1:30 p.m. In it was a host of law enforcement officers and a scattering of other adults, some with cameras and other carrying trays of cupcakes. Read article

Transplant Survivor Thankful for 'LifeGift'
1/11/2012

12/29/2011 (My Fox Houston) - Houston resident Twana Schulz underwent double lung transplant surgery on Christmas Day 2010 and is thankful for the gift that gave her a second chance to live. Read article and watch video

France OKs United Therapeutics IV treatment
1/11/2012

12/28/2011 (Gazette) - French regulatory agency Agence Francaise de Securite Sanitaire des Produits de Sante has approved IV use of Remodulin, which is already approved in most of Europe and in the U.S. for subcutaneous infusion treatment, or continuous injections just under the skin, according to United Therapeutics information. Read article

Spring into Action: Planning your Spring Special Event
1/10/2012

Taylor Caffrey Memorial 5K walkerThursday, Jan. 12, 3:00 p.m. ET
Webinar (Phone AND Internet)

Let’s get the ball rolling for an event-ful 2012! Now is the perfect time to start planning a Spring special event. To help get you started, this webinar will provide an overview of planning a PHA special event and the PHA resources available to help you along the way.

Register now!

Improve Life for PHers
1/4/2012

If you had $5,000 to do something to help the PH community, what would you do? This is not a hypothetical – it’s a real opportunity for you through the Tom Lantos Awards program through PHA. And your ideas are being accepted for review until Jan. 27, 2012.

Learn more and apply today!

Happy Holidays and Thank You
12/23/2011

Holiday Card detailHappy Holidays from the Pulmonary Hypertension Association. All of us at PHA wish you a happy and hopeful 2012. We thank you for all you do in the fight against PH. We are empowered by you.

View our holiday card

Celebrate with PHA's Patient Telephone Support Group
12/21/2011

Sometimes the holidays are stressful times. It always helps to have someone else to talk to, someone who understands what it’s like having PH. Want to chat with another patient? Can't make it out to a local support group meeting? PHA's patient telephone support group reaches out to those who can't make it to local meetings, whether because of health, work hours or distance.

PHA's Patient Telephone Support Group

When: Thursday, Dec. 22, 8 p.m. ET

Where: On the phone and online. The web portion is optional. You must dial in to participate. Details will be provided after you register.

Register: https://cc.readytalk.com/r/n21vbsm9ernp

For assistance: Sophie, 301-565-3004 x758

BREAKING NEWS: USA Today includes information on PH
12/14/2011

UPDATE! Check out the USA Today insert on pulmonary hypertension and pulmonary health that was released in selected regions Friday morning! View insert

Friday, December 16
Boston, Chicago, Dallas, Nashville, St. Louis, Washington, D.C. and surrounding states

This Friday, USA Today will include an 8-page section on pulmonary hypertension. This section will reach more than 1.2 million readers in six major metropolitan areas and surrounding states with information about the symptoms and treatment of PH.

Most importantly, in the section’s articles readers will find the personal stories of patients and medical professionals impacted by PH and learn where they can get more information. In two display ads, they’ll discover ways to contact PHA and to donate to our new Robyn Barst Pediatric Research Fund (www.PHAssociation.org/BarstFund).

Check it out! The section will appear in regions listed below. It will also be available online.

  • Boston (includes all of New England, including Maine)
  • Chicago (includes Milwaukee & Northern Indiana)
  • Dallas (includes Oklahoma & Arkansas)
  • Nashville (includes all of Tennessee & Western Kentucky)
  • St. Louis (includes Southern Illinois)
  • Washington, D.C. (includes Baltimore & Virginia)

Spread the word to family and media

The USA Today insert can help you educate your family and friends about PH. While you’re at it, encourage them to contact their own local media – print, broadcast or online – to share more information about PH.

Everyone whose life has been touched by PH has a story worth telling, and media coverage takes many forms — from the news story to the letter to the editor. PHA is here to help with media coverage. Ask your friends and family to share their stories with local reporters. They can get started at http://www.PHAssociation.org/Awareness/50StateMediaChallenge or by contacting Elisabeth: ElisabethW@PHAssociation.org; 301-565-3004 x753.

Awareness Month Victories: Even Pre-K Students Can Make a Difference!
12/13/2011

Haley Lynn's Pre-K classOur community found some truly creative ways to raise awareness about pulmonary hypertension during PH Awareness Month this year. Everyone from pre-schoolers to church parishioners is advancing our cause!

Barbara Thompson added another proclamation to her list with one from the mayor of Memphis, Tenn. She then gained coverage about pulmonary hypertension, PH Awareness Month and the four proclamations she garnered – state of Tennessee, city of Bartlett, Shelby County and Memphis – in her church bulletin of all places. Like so many other PHers this November, Barbara thought outside the box to get her friends and acquaintances thinking about PH. Way to get creative, Barbara!

Haley Lynn, a 19-year-old with PH, teaches a Pre-K class, and she talked to her kids about pulmonary hypertension this month. Haley says:

This is my Pre-K class that I teach in Amarillo, Texas! They didn't quite comprehend much because of their age, we broke it down very simple on what lungs are and that's about all we explained! We mainly wanted to do this so we can hang these PH coloring papers in the halls for our other teachers and staff members to see as well. And the parents! It made a cute lesson.

Keep up the great work throughout the year, and let us know about your victories, large and small, so we can share them with the community! Contact Web@PHAssociation.org

Holiday JAM for PHA
12/12/2011

Bernie Gore organized the inaugural James A. Martin Memorial Walk for PH (“JAM for PHA”) in memory of her father this past June. Bernie is also very involved with the St. Dorothy School in Glendora, Calif., where her eldest child attends. The school’s 8th grade class decided to find a way this November to continue support of the PH cause in the spirit of the holiday season, and to kickoff fundraising efforts for the 2nd Annual “JAM for PHA,” slated to take place in 2012. Below you can see how the students and faculty at the school successfully took action and became an inspiration to others. She reports:

The 8th grade students led by their teacher, Mrs. Sue Sweetman… shared in an effort to show the giving spirit of Christmas. Honoring the memory of James A. Martin, they sponsored a 2011 Christmas Tree & Wreath sale to raise funds in support of finding a cure for PH! Way to go, Bruins!

Southern California PHers: stay tuned for more information about the 2nd Annual James A. Martin Memorial Walk for PH in 2012!

St. Dorothy's 8th grade class Christmas Tree and Wreath Sale for PHA

Awareness Month Victories: Singing and Dancing for PH!
12/8/2011

Our special event coordinators are you, our PH community, and as always, the events this year were fun and creative – like the two we have to report on today.

Zumba!Zumbathon for PH
Canton, Connecticut
PH patient, Generation Hope member and Board member Colleen Brunetti wanted to build on the dance fitness craze of Zumba in order to raise awareness and funds for PH. Held on November 18, this was the first event of its kind for PHA! Because of Zumba’s overall popularity in this country, the event drew many who were not familiar with PH, making this a great awareness raiser! Five Zumba instructors donated their time to lead classes for the public throughout the day, and attendees paid an entrance fee, which went directly to benefit PHA programs and research. The Zumbathon included a silent auction and plenty of creative touches, like homemade lollipops and buttons for sale, courtesy of local PH patients.

Sing and Soar for a Cure
West Milford, New Jersey
High school student and PH patient Haley, along with her vocal performance group, hosted a fun special event filled with singing and instrumental performances at a local restaurant in West Milford, N.J. on November 13. The group and attendees were treated to a special guest accompanist: trumpeter Kent Smith, who performs with the Rolling Stones! Over 60 people attended the concert. Even though donations were only suggested, they were able to raise over $1,000 for PHA!Sing and Soar!

Keep up the great work throughout the year, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

Listen to PHer on Radio Friday
12/7/2011

Friday, December 9
9:00 a.m.
Listen live (click the “Listen Live” button on the top right of the page)

PH patient Merle Reeseman will be on the radio this Friday, December 9, at 9:00 a.m. Merle is a local support group leader, online chat support group leader, PH activist, and a recipient of PHA’s Outstanding Citizen Award. Support her by listening on Friday and telling all your PHriends about it!

You can listen live on WPIC AM 790 if you live in the Mercer County, Pennsylvania, area OR you can listen live online at http://www.790wpic.com/ and click on the “Listen Live” button.

Awareness Month Victories: Dr. Barst Speaks Out on National Radio Tour
12/5/2011

Pulmonary Hypertension Awareness Month ended on a high note this year! Dr. Robyn Barst, former Director of the New York-Presbyterian Pulmonary Hypertension Center, participated in nine radio interviews on November 30 to discuss the disease and the importance of early diagnosis. The radio media tour, sponsored by Actelion Pharmaceuticals, included interviews on the following stations:

  • KXYL – Regional Central Texas (Abilene/Brownwood/Waco)
  • WIZM – Madison/La Crosse, WI
  • KWLM – Minneapolis
  • WGRT – Detroit
  • KCMN – Colorado Springs
  • It’s Your Health Network – National
  • WAMV – Roanoke
  • KPQ – Seattle
  • WDIS – Boston

Keep up the great work throughout the year, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

Awareness Month Victories: Press Coverage – Read All About It!
12/1/2011

Pulmonary Hypertension Awareness Month is a great opportunity to pitch PH to a reporter. PHers across the country received media coverage for pulmonary hypertension this November, as you can see from the article highlights below.

  • Arizona, Tri-State Online: Joy Gore gained coverage about pulmonary hypertension in the Arizona, Nevada, California tri-state area by discussing her experiences with the disease and her work as a support group leader. Gore's Awareness Month triumphs include convincing her representative to co-sponsor the Tom Lantos Research and Education Act, obtaining a proclamation for Awareness Month from the governor, and raising funds for PH as co-chair of a fundraising gala. Read the article
     
  • California, Marketwatch.com: This press release issued by the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford promotes awareness about PH and their annual race against PH. It also announced the launch of the Pulmonary Hypertension Association's 6-Minute Marathon. Read the press release
     
  • California, Scope: PH patient Nathan Diehl, who participated in the annual Race Against PH at Stanford, tells his story in this interview with the Stanford School of Medicine blog. Read the interview
     
  • Colorado, The Gazette: PH patient Margaret Hrchek speaks out in this article about patients overpaying for oxygen concentrators. Read article
     
  • Florida, Florida Today: With encouragement from Janet Rooks, Dr. Pamela Tronetti featured pulmonary hypertension in her weekly health column. Read the article
     
  • Florida, Orlando Sentinel: The Orlando PH Support Group's Chili Cook-Off and Bake Sale was highlighted in the Sentinel's events section. Read the event announcement
     
  • Iowa, Iowa State Daily: Liz Kirke, a member of the Chi Omega sorority, passed away from PH in 1985. Her brother had also passed away from PH at the age of 16. A scholarship fund was established in Liz's memory and the sorority sisters raise money for the fund each year. Read the article
     
  • Louisiana, Shreveport Times: Martha Thompson, a 75-year-old woman who was just diagnosed with PH four months ago, talks about PH and her new PH support group. Read article
     
  • Michigan, ABC 7 - WXYZ: Rose Gjorgjeski and her husband are closing their family bakery after his diagnosis with pulmonary hypertension. They know it's the right thing to do, but Rose says, "Meeting these people, the wonderful customers ... they're not just customers, they are family." Watch the video
     
  • Mississippi, ABC 13 – WLOX: PH patient Michael Condreay and Dr. Ijlal Bahber from the Singing River Health System Regional Pulmonary Hypertension Center in Ocean Springs team up to explain PH in this interview. Watch the video
     
  • New Mexico, ProView Networks: Jason Garcia appeared on The Steve Davis Show, an online television show, to raise awareness about PH and to promote his 2nd Annual Fun Run/Walk. the walk is held in memory of his father who passed from PH. Watch video (starts @ 2:30 ticker)
     
  • New Jersey, Hudson Reporter: PH patient JoMarie Bennett and her husband Vincent received a proclamation designating November PH Awareness Month from their city council. This short description of the presentation includes a photo. Read article (bottom of page)
     
  • New Jersey, Mahwah Patch and NorthJersey.com: Mahwah High School T-Birds and their fans dressed in purple to support Pulmonary Hypertension Awareness Month and team mascot Vinny Accurso, who is living with PH. (And just in case you're interested, the T-Birds won the game 55-20!) Read the Mahwah Patch article & read the NorthJersey.com article
     
  • New York, PressConnects.com: Lisa Lannone wrote this piece about PH Awareness Month, the importance of recognizing the symptoms of PH and her PH support group. Read viewpoint piece
     
  • Ohio, Lancaster Eagle Gazette: Dr. Christian Tencza and his team at Fairfield Pulmonary and Critical Care Associates at the Fairfield Medical Center were featured for attending PHA's PH Professional Network Symposium. Read article
     
  • Pennsylvania, The Morning Call: This article features the story of 81-year-old patient and PH support group leader Joan Stevenson. "I won't take: 'It can't be done' as an answer," says Joan. Read article and see short video clip of Joan
     
  • South Carolina, The State: Doug Taylor wrote this letter to the editor about PH, the need for earlier diagnosis, and the importance of research and education. Doug urges readers to contact their Members of Congress to co-sponsor the Tom Lantos PH Research and Education Act. Way to go Doug for awareness and advocacy! Read Doug's letter to the editor
     
  • Tennessee, NBC 3 – WRCB: Dr. Mike Czarnecki and patient Christine Wilkinson team up to educate others in this interview about PH and its symptoms. Read article
     
  • Tennessee, PRLog: Barbara Thompson pitched this press release about PH Awareness Month that included information PH, PH Awareness Month proclamations from Governor Bill Haslam, Shelby County and the city of Bartlett, and how to get in touch with resources at PHA. Read the press release
     
  • Texas, Corpus Christi Caller-Times: Delia Rivera, who is living with PH, and her husband Michael, were featured in this lengthy story in their local paper. The Rivera's story includes the loss of Delia's sister to PH because she wasn't properly diagnosed, the Rivera's PH support group, and Delia's own journey with PH. Read the article
     
  • Texas, The Paper Magazine: PHA Board of Trustees member and PH parent Jack Stibbs organized the arm wrestling competition featured in this article, which also raised awareness about PH and promoted Jack's upcoming crawfish festival. Read article
     
  • Virginia, Rockbridge Weekly: Seven-year-old Ashley Conner is giving away some of her belongings in exchange for donations to the Make A Wish Foundation. Read more
     
  • Online, Daily Rx: This coverage of a recent research study includes information about PH and the six-minute walk test as an indicator as to whether a patient's PH will worsen. Read article
     
  • Online, RT Magazine: PH Online Awareness Day got a shout-out in this online publication for respiratory therapists. Read the article
     
  • Canada, Simcoe.com: Ruth Dolan and Loretta Chu share their stories in this article, which highlights their efforts to fight back against the disease. Loretta helped found the Toronto chapter of PH Canada, of which Ruth is a member. Ruth, whose daughter Emily has PH, has tasked herself with educating every community in the province about the disease. She made progress this November with three PH Awareness Month proclamations. Read article

Let PHA know about your Awareness Month victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org. For more information about sharing your story with a local reporter, contact PHAware@PHAssociation.org.

I'm Most Aware of My Pulmonary Hypertension When...
11/30/2011

We asked people living with pulmonary hypertension to finish the following sentence: "I'm most aware of my pulmonary hypertension when..."

When I have to take my meds. So I can enjoy my time with my family

I'm walking with family & friends and I realize that they have moved ahead of me.

I am trying to sing in church, a higher note, and unable to have the breath to push the sound without coughing

I feel my heart pounding out of my chest and can hear it in my head.

when i feel my heart racing like mad and when i have to take my meds

When family comes from out of town and I can't go out with them because my legs are killing me. And every time I have to redo my Remodulin :/

Be able to wake up at night having chest pain.

I am reminded all the time. When I look in the mirror and I see my hickman cath bandage or my face is flushed from the FLOLAN. I think the saddest for me is knowing I can't take my kids outside to play (by myself) because I can't keep up or lift them.

When I push myself too hard at work :(

I think of the future...

When taking meds throughout the day

When I experience uncomfortable palpitations.

The pain the helplessness and now she has gone. It still her it took her life at 19

When I trip over the oxygen tubing 100 times a day.

I dream of traveling abroad.

When I'm making sure I have enough oxygen with me to go somewhere for the day & then have to switch tanks while I'm there. Also when my dog steps on my tubing or it gets stuck in the door when I'm walking and it yanks me.

When I'm standing in front of a big flight of stairs.

Whenever I exert any energy and that shortness of breath comes about!

I try to rush to get things done...

at night time when i don't have the energy to walk up 2 flights of stairs to get to my bedroom so i end up sleeping on the sofa :-(

When I dream of having babies

I know longer have PH because I had a transplant, but I am reminded of jaw pain! Never being able to just take a bite of something without pain! I still forget that I no longer have to deal with that, but brace myself esp. when I eat chocolate!

I've been out running errands and get tired too quickly.

When i try to play w.my grandbaby n i can't ...cause i SOB

my daughter's head gets sweaty and she's short of breathe and someone always says, "Oh, does she have asthma?"

I realize I can no longer walk, talk and chew gum at the same time.

When I meet the woman of my dreams and she tells me she loves long romantic moonlit walks.

When i see all the little babies around me and know that having one of my own is too dangerous.

When I play with my 18 month old son- which I can now enjoy b/c of wonderful doctors and meds.

When I walk up the stairs in the morning. Or when I am playing with my 3 boys outside!

I out walking and esp when it's cold.

When I go out in the cold, when my oxygen hose gets caught on stuff and pulls my ears, when I get chest pain and palpitations, when the smell of cut grass takes my breath away, when I discover that the grocer has packed the bags too heavy for me to carry, when my daughter says she wants to wait 10 years before having children and I wonder if I will be here.

I do not have PH, but I know 2 people who have had it. My heart goes out to every single one of you who commented. I cannot imagine how hard it has to be living with such a terrible disease!! I look up to you all, you have inspired me so much! Usually when I read these things, I see the same names of people who have commented. :(

I get stressed and I have to stop whatever I'm doing or worrying about and think about me.

When I attend a PHA support group meeting and I hear a chorus of oxygen machines whirring and puffing away and I tell myself not to be scared that one day I might be joining the choir. Just enjoy the music now and as long as it lasts.

When faced with a flight of stairs! When my kids realize they have walk too fast & come back to get me.

I step on my oxygen tubing....lol.

I have to sit down and rest for a couple minutes.

Walking up stairs! But since my lung transplant I don't have to think about

I think twice about doing something like rollerblading, hiking, etc. When my limitations hit me in the face.

Every day. It's all the small things that add up. Walking up stairs, having to finally give-in & accept the help for simple things, such as housework. Being tethered to an oxygen cord and being caught in it. Having to plan my work day around my Lasix pill. Constant insomnia. My list could go on and on... But like so many of you I'm just thankful I have today.

My husband has PH and I am most aware of his PH when I get home from work in the evening & he needs to go take a nap b/c he is fatigued. And also when his mini-med Remodulin pump starts beeping every night at the same time for him to change it.

The shortness of breath from bending over to put my shoes on, getting dress and of course carrying my purse with my pump in it to bed, shower everywhere 24/7

When I load myself up like a pack mule to leave the house -- my oxygen "backpack," an extra tank, Ventavis pack, purse, and whatever else I need to be taking care of...

When I back my car in driveway, because I can't walk around it anymore

I am climbing stairs and outside in cold weather.

When I want to be physically active and I have to take my oxygen everywhere I go. When I'm short of breath.

When I want to go to church, go places with friends, go see family, etc. and don't even have enough energy to take a shower and get dressed! Which happens a lot!!!!

When I cannot even get my laundry out of the dryer

Trying to hurry or walk up an incline or steps. I'm not crazy about stooping over, either

Awareness Month Victories: Congressional Luncheon Builds Awareness, Legislative Support
11/29/2011

"I found out that I am one of only a few 30 plus year survivors of PH...I have been to the very rock bottom with this disease and I know the despair, sorrow, and destruction associated with everything patients deal with trying to live with PH. I have been fortunate enough to know the other side as well, the side that gives hope to continue the battle against PH."
- Jeannette Morrill shared her story at PHA's Congressional Luncheon

Jeannette Morrill’s Congressman, Mike Michaud (D-ME), agreed to co-sponsor the Tom Lantos PH Research and Education Act after Jeannette met with him during PHA’s Congressional Luncheon and Advocacy Day.Each November, PHA hosts a luncheon in Washington, D.C., that brings pulmonary hypertension patients, their families, and their medical professionals together with Members of Congress and legislative staff. The goal: that our elected officials understand pulmonary hypertension and keep the PH community in mind when they make policy decisions.

PHers from across the country worked to make this year's event a success by participating directly or inviting their Members of Congress. Thanks to your calls and emails, nearly 100 people, representing more than 25 congressional offices attended the luncheon.

Powerful presentations from PH patient Jeanette Morrill, PH-treating physician Dr. John Berger, Congresswoman Lois Capps, Congressman Kevin Brady and Sara Mabry from Sen. Bob Casey's office, inspired many in the audience to get involved in the fight against PH.

After lunch, PH community members reinforced the message by visiting their representative's offices. Within a week, four Congressional offices contacted PHA to let us know that they plan to co-sponsor the Tom Lantos PH Research and Education Act. Pending co-sponsors include Mike Michaud (D-ME), Christopher Murphy (D-CT), Jason Altmire (D-PA), Louise Slaughter (D-NY). We'll provide PHANews updates when these co-sponsorships become final.

What Can You Do?

Members of Congress and staff from the following legislative offices participated in PHA's Congressional Luncheon and Advocacy Day. If your senators or representative are on the list, thank them. If they're not, follow up and let them know you're sorry they couldn't attend. Either way, ask them to co-sponsor the Tom Lantos PH Research and Education Act.

Find contact information for your Members of Congress. For more information or to find out if your Member of Congress has already become a co-sponsor, contact PHA's Grassroots Campaigns Associate, Elisabeth Williams at 301-565-3004 x753 or Advocacy@PHAssociation.org.

Offices Represented at the Luncheon or Visited During Advocacy Day

  • Dawn Smith with Father and Caregiver Richard SmithRick Crawford, AR
  • Lois Capps, CA (bill sponsor)
  • Richard Blumenthal, CT
  • Joe Courtney, CT
  • Jim Himes, CT
  • John B. Larson, CT
  • Joe Lieberman, CT
  • Christopher Murphy, CT
  • Eleanor Holmes Norton, DC
  • John Carney Jr., DE
  • Corrine Brown, FL
  • C.W. Bill Young, FL
  • John Lewis, GA
  • Hank Johnson, GA
  • Daniel Inouye, HI
  • Dave Loebsack, IA
  • Jesse Jackson Jr., IL
  • John Sarbanes, MD
  • Todd Platts, MD
  • Elijah Cummings, MD
  • Michael Michaud, ME
  • Charles Rangel, NY
  • Gregory Meeks, NY
  • Louise Slaughter, NY
  • Nita Lowey, NY
  • Bob Casey, PA (bill sponsor)
  • Joe Pitts, PA
  • Todd Platts, PA
  • Richard Burr, SC
  • Mick Mulvaney, SC
  • Joe Wilson, SC
  • Kevin Brady, TX (bill sponsor)
  • Sheila Jackson Lee, TX
  • Gerald Connolly, VA
  • Randy Forbes, VA
  • Jay Inslee, WA
  • Nick Rahall II, WV
Couple Spur Support for PH Patients
11/29/2011

11/28/2011 (Corpus Christi Caller-Times) - After losing a family member to PH, Michael Rivera prompted Corpus Christi Mayor Joe Adame this month to proclaim it Pulmonary Hypertension Awareness Month and asked Gov. Rick Perry to issue a proclamation last week for Texas. Read article

A Mission for Breath
11/29/2011

11/28/2011 (Mohave Daily News) - The average human takes more than 650 million breaths in their lifetime, but at age 67, Fort Mohave resident Joy Gore has to fight for every last one. "I'm on a mission," Gore said. "I don't want anybody else to go through what I've gone through. With a support group, you can learn more about how other people are handling PH and what kind of new drugs and procedures are available for it." Read article

I Was Misdiagnosed ____ Times! Stories of Diagnosis
11/28/2011

We asked community members to fill in the blanks of the following sentences. Below are their responses.

I went to [____] doctors, was misdiagnosed [____] times, and had been living with symptoms for [____ weeks/months/years] before being diagnosed with pulmonary hypertension. The most difficult thing about trying to get my diagnosis was [________].

I went to 5 different doctors, was misdiagnosed 4 times, and have been living with symptoms for over a year before being diagnosed with pulmonary hypertension. The most difficult thing about trying to get my diagnosis was to keep going, keep trying to get answers and not let everyone else kick me down because I didn't look sick.

I was one of the lucky ones. I went to the local hospital which sent me to a bigger hospital which diagnosed me and then sent me to an even bigger hospital where I met my wonderful doctor and her amazing staff.

I went to a bunch of doctors, was misdiagnosed hundreds of times, and had been living with symptoms for 8 or 9 years before being diagnosed with pulmonary hypertension. The most difficult thing about trying to get my diagnosis was all the doctors thought I was having anxiety attacks and one doctor even had an echo from 6 years before I was diagnosed that said I had a PA pressure of 40 and he didn't think that was relevant!!!

I went to 6 doctors, was misdiagnosed 4 times, and had been living with symptoms for 8 years before being diagnosed with pulmonary hypertension. The most difficult thing about trying to get my diagnosis was getting them to listen and then finding out I had HHT and PAH. I actually had a doctor ask me at 10 (20 years prior to my diagnosis) if I was faking the symptoms for asthma. I wish she would have looked into more back then.

I only went to one doctor and was married to a cardiac nurse at the time. With follow up each year, guess you could say I was misdiagnosed three times and have been living with symptoms for six (yes!) years. Just diagnosed and having a right heart cath on Monday. The most difficult thing has been being made to feel like "it was all in my head" and that I was a hypochondriac. :( (My new doctor is a PH specialist and says it is incredible I've had symptoms and echoes showing high pressures for this long and I'm not either dead or deathly ill.) Be your own advocate!!!!!!!!!

I went to 4 different doctors and was misdiagnosed twice....with asthma! I believe I was living with the symptoms for 4 years before I changed my primary doctor and he put me straight in the hospital on my first visit with him (thank God for him). The difficult part of being diagnosed was the doctors trying to tell what was wrong when I knew my body but no one would listen!!!

I went to 3 different doctors, was misdiagnosed 3 times and had been living with PH for at least 7 years. The most difficult thing was that I was young at the time (18) No one would listen!!!

I went to countless doctors and ER visits and was misdiagnosed for at least 2 years. The most difficult was that people who knew me and loved me doubted me. :(

I went to 6 doctors, was misdiagnosed even more often, and had been living with symptoms for 15 years before being diagnosed with pulmonary hypertension. The most difficult thing about trying to get my diagnosis was people truly believed I pretended to be ill just to gain attention or to manipulate.

I also was one of the lucky ones. I only had symptoms for 4 months (very quick, very severe), the first doctor I went to (cardiologist) said it was a lung problem, we spent 6 weeks eliminating secondary causes and then I had a RHC (right hearth catheterization) and went to a PH specialist in northern Virginia. Just amazingly fortunate after all the other sad tales.

My daughter was diagnosed at age 2 along with a heart defect she was born with. She fought so hard to be like there was nothing wrong. She had a fab life and was very strong. She partied with her friends. She was able to do all the things she loved. Sildenafil helped. Then at 19 she took a turn for the worse. The hospital said she'd be fine. They sent her home. Four hours later she passed. What I'm trying to say is that I had my daughter for 16 years more than doctors expected. Just keep fighting, all of you. Hopefully they'll find the cure. Love to you all. xx

I went to 4 doctors including a cardiologist and a pulmonologist, was misdiagnosed 7 times and had been living with symptoms for 2 years before being diagnosed with PH. The most difficult thing about trying to get my diagnosis was that people didn't believe there was anything physically wrong with me. I was told that I was just stressed and depressed from caring for my ailing father, but I KNEW there was something physical wrong with me! Very, very, frustrating.

I went to one doctor and I went through 6 tests. After the last test they told me I had PH. And then it took 1 and a half months to get to see my PH doctor. She is the most wonderful doctor. My meds are not working so she is going to try the infusion on me. I found out June 2011.

This is a terrible disease. Always insist on a right heart catheter immediately

Wow, I can't believe these stories of frustration. I was lucky in that I was diagnosed fairly quickly. The symptoms of PH are awful, but attributable to other diseases. Chest pain, extreme fatigue and sometimes fainting...this is not normal. Stick to your guns when talking to your doctors. Do your own research. There are many resources available to you - use them.

Wow! My Mom went through exactly what these people are describing. It was heartbreaking to read these posts. I'm very grateful for PHA.

I think I lived with the symptoms a lot longer than I should have, always contributing it to something else. One pulmonary doctor told me I couldn't breathe because I didn't exercise. Plus being overweight is the reason why most doctors feel everything is wrong with you so that is why getting my diagnosis was so hard.

My mother went to a couple of doctors who diagnosed her with COPD. As time progressed, her symptoms worsened. I located a well-known cardiologist who ordered an echocardiogram and learned she had right side heart damage due to PH. He referred her to a specialist who then ordered a right heart cath. Her pulmonary pressure was 118 - so very severe. We have been treating her with meds and currently an infusion for the past two years. This disease is just horrible. More money needs to be raised and people made aware of this in order to continue the research and hopefully find a cure! So many of these stories sound so familiar! Always get a second opinion when in doubt!

I was one of the lucky ones. My PCP had me have lots of tests done then sent me to his cardiologist. He did a right heart cath and my pulmonary pressure was 64. I got my diagnosis just less than 3 months after my symptoms started. I have a great bunch of doctors that make me feel special.

I went to several doctors, was misdiagnosed 4 times, and had been living with symptoms for 2 and a half years before being diagnosed with pulmonary hypertension. The most difficult thing about trying to get my diagnosis was that my body told me that this would kill me, but nobody believed me.

All these stories are so familiar. I went to 4 doctors over 3.5 years, I was told by the cardio doctor that nothing could be done. Once I ended up in the hospital for 4 days I got the right diagnosis, but by then most my friends and relatives thought I was a hypochondriac. We are really sick, strive to keep strong, and work hard at being healthy as you can be with this disease.

I went to TWO doctors (my primary, who saw a slight abnormality on my EKG and referred me to a cardiologist), was misdiagnosed ZERO times, and had been living with symptoms for MAYBE A YEAR before being diagnosed with pulmonary hypertension (completely my own fault, BTW - I put off going to the doctor). The most difficult thing about trying to get my diagnosis was ... IMO, NOTHING. When I passed out on the treadmill at the cardiologist's office, he *immediately* ordered a left heart cath - when that didn't show a problem, he went ahead and did a right one. Tada! I feel very fortunate that my cardiologist was familiar enough with PH to be willing to look for it!

My child was seen once and after batteries of tests in a week while in the hospital, diagnosis was confirmed.

My PCP did tests, then sent me to a pulmonologist, who did more tests, then sent me to a cardiologist, who did a RHC. My pressure was 74. It took about 6 months to get it diagnosed. I just hate the shortness of breath so much. I've had no other symptoms other than that. My cardio doctor said a lot of people with SOB have PH but they and their doctors are just not aware it exists. People think you aren't ill because you look fine...which is frustrating.

I was pretty lucky my GP listened to my heart and sent me for an echo right away, the respiratory doctor picked up on it as well, but it takes ages to sort out. I've been waiting five and a half months for people to get off their rear end and actually help. All it is now is all talk, my doctor has tried her best sending me for tests but no one seems to want to know about it especially since I also have long qt syndrome.

Awareness Month Victories: Feed Them and They Will Come!
11/22/2011

A PH poster and treatsThe pulmonary hypertension community is spreading the word about PH in ways large and small! Check out some of the fun, creative ways PHers are raising awareness this November.

Mike McAdams says: "Quick and fun way to share info at work! I put a poster and treats out for Halloween by my desk and as people took candy they would see the PH information." The old adage "feed them and they will come" is true! Check out his desk display to the right

The Caparra Wellness Center PH Support Group in Puerto Rico organized education and outreach at their regional mall, the San Patricio Plaza Mall. Check out the fun slideshow scrapbook of the event!

Melanie Kozak broadcast the following message to her followers on Twitter: "Do you want to know what Pulmonary Hypertension feels like...try breathing through a straw!" She says she got a lot of retweets out of it, so feel free to borrow Melanie's idea and share with your Twitter and Facebook friends.

Fort Wayne Indiana Support Group Party, with speaker Amanda Lutter RN, BSNSupport groups around the country are holding all types of Awareness Month events, from galas and fun walks to local awareness support group meetings. The support group in Fort Wayne, Indiana held a PH party at a local Italian restaurant. At the event, PHA Volunteer Services Director Debbie Castro spoke about PHA patient and caregiver programs and about how group members can get involved in the movement to find a cure. Over three dozen patients and caregivers attended the party, including several newly diagnosed patients and a member of Generation Hope, PHA's virtual support group for young adults with PH. (see photo of meeting facilitator and nurse Amanda Lutter right)

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

Awareness Month Victories: Record Attendance at Early Diagnosis Research Webinar
11/21/2011

As part of the American Thoracic Society's Pulmonary Hypertension Week, PHA hosted a webinar with leading experts in the field on "Improving Patient Outcomes and Early Diagnosis: An Examination of the REVEAL Registry." Drs. Gregory Elliot, Vallerie McLaughlin, Lynn Brown, Richard Channick and David Badesch presented groundbreaking data from the REVEAL Registry about trends in PH patient care. The event brought together 119 patients, caregiver and medical professionals, making it the most attended webinar in PHA Classroom history.

The doctors presented research that suggests that despite a range of available therapies, patients in the United States still experience significant delays in diagnosis. They discussed the need for early diagnosis of PH and more of the latest research from recently released white paper entitled, "PAH: Recommendations for Improving Patient Outcomes."

Missed the live webinar? You can watch the recording in PHA Classroom.

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

Heart Rate Recovery Predicts Clinical Worsening in Pulmonary Hypertension
11/21/2011

11/18/2011 (EurekAlert) - Heart rate recovery at one minute after a six-minute walking distance (6MWD) test is highly predictive of clinical worsening and time to clinical worsening in patients with idiopathic pulmonary arterial hypertension (IPAH), according to a new study. Read article

Awareness Month Victories: Local, State and National Proclamations across the Country
11/18/2011

Michelle Holden and the Palm Bay, Florida, MayorPHers garnered proclamations declaring November Pulmonary Hypertension Awareness Month in localities and states across the country. A couple groups even got citations from their Members of Congress. Check out the list of proclamations we've gathered so far and the PHers who secured them.

Where (alpha by state)

Garnered by

State of Arizona                Joy Gore
Diamond Bar, Calif. Angelique Alcala
State of Florida Al Abram
Cocoa, Fla. Michelle Holden
Jacksonville, Fla. Michelle Holden
Melbourne, Fla. Michelle Holden
Miami, Fla. Michelle Holden
Orlando, Fla. Michelle Holden
Palm Bay, Fla. Michelle Holden
Vero Beach, Fla. Michelle Holden
Council Bluffs, Iowa Joshua Griffis
State of Maryland Nicole Cooper and Alex Flipse
Takoma Park, Md. Alex Flipse
Montgomery County, Md. Alex Flipse
State of Minnesota Lois Piper
State of Nebraska Joshua Griffis
Bellevue, Nebr. Joshua Griffis
Omaha, Nebr. Joshua Griffis
Papillion, Nebr. Joshua Griffis
State of New Jersey Tara Suplicki
Clifton, N.J. Melanie Kozak
Passaic County, N.J. Melanie Kozak
Secaucus, N.J. JoMarie Bennet
Thomasville, N.C. Janet Cecil
State of Pennsylvania Merle Reeseman
Allentown, Penn. Lehigh Poconos PH Support Group
Lehigh County, Penn. Lehigh Poconos PH Support Group
Northampton County, Penn. Lehigh Poconos PH Support Group
Pike County, Penn. Lehigh Poconos PH Support Group
State of South Carolina Meg Horne
Easley, S.C. Meg Horne
Greenville, S.C. Meg Horne
Spartenberg, S.C. Meg Horne
Spartenberg County, S.C. Meg Horne
State of Tennessee Barbara Thompson
Bartlett, Tenn. Barbara Thompson
Shelby County, Tenn. Barbara Thompson
State of Texas Michael Rivera
Corpus Christi, Texas Michael Rivera
   
Legislative Representative Garnered by
Congresswoman Ann Marie Buerkle (N.Y.) Sarah Smiles Fun Walk
Congressman Charles Dent (Penn.) Lehigh Poconos PH Support Group
State Sen. John A. DeFrancisco (N.Y.) (citation)

Sarah Smiles Fun Walk

 

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

Advice for Those Newly Diagnosed with Pulmonary Hypertension from Those Who've Been There
11/18/2011

We asked people living with pulmonary hypertension to finish the following sentence: "If you're newly diagnosed with pulmonary hypertension, my best advice to you is..." Here's the advice the PH community had to offer.

Don't let it define you just continue to be who you are

Don't give up there is a lot of different drugs that can prolong your life, and most of all stay strong

To stay positive

Read as much as possible about the disease. You don't want to be blindsided by anything.

live your life the way you have; don't let the pulmonary hypertension run your life.

SEE A SPECIALIST ASAP!!

Don't give up hope. With new advancements they may find a cure or better treatment. And always know I love you!!!!!!!!!!

Find a specialist who keeps apprised of your situation and learn about the disease. Also, listen to your body; everyone is different and reacts differently.

First off, find a doctor that knows about your situation and work with them closely. Find out what to expect and you may find a drug that can help and make things better for you. Second, surround yourself with loved ones. They can always give you the encouragement you need when times are at its roughest. Third, be you...stay strong, eat right, and things will work out just fine. Trust in yourself!

Enroll in a Pulmonary Rehab program immediately!! You'll learn a lot and get in better respiratory shape.

Get the best doctor you can; mine is at the Cleveland Clinic. Adapt the physical things that you must change, but NEVER give up hope, and try to live your life fully every day. You are so much more than just this disease! Don't see it as an eminent death sentence; I am still going stronger than ever and it's been 10 years now. Live and be strong!!

Join a support group! The knowledge you will gain from others is tremendous. Take you, your caregivers and your family. Keep informed on advancements. Stay positive and strong. And as Melissa says, "See a specialist, ASAP".

Journal to keep track of your feelings, info you are given or learn, and anyone you talk to like insurance reps and doctors. Learn as much as you can and speak out about PH because not much is known about our 2nd blood pressure by the public you will have to deal with. So be aware (learn) and share (talk out). Remember that PH research has come a long way so there is hope for everyone.

Don't ever give up! Do not let your disease define who you are. Stay positive and live each day to the fullest!

Be your own advocate, learn to listen to your body. And never, never give up hope!

Learn as much as you can about the disease. Join PHA as they are a great resource for information and give wonderful support to patients, family, and caregivers. Live life to the fullest!!! Never give up and FIGHT!!!

Get thee to a PH CENTER to be treated by an experienced doc that treats many other PH patients and participates in clinical trials.

Ask lots of questions, don't be afraid to talk about it, and MOST important...Don't give up hope!!!!!

Forget every statistic you hear! And remember: you have the disease; the disease doesn't have you! Talk to other PHers!

Don't think that it is going to control your life, you're in control of your life. Live every day to the fullest.

A healthy mind is just as important as a healthy body. Don't try to be a superhero, it's ok to break down and when you do just pick yourself back up. Remember always that it's a fight that you're capable of winning. Don't give up.

Attend a meeting! Find the closest PHA conference or support group and ask as many questions as you can. Talking to others with experience is the best therapy.

Learn all you can as soon as you can, and don't be afraid to think "outside the box."

Surround yourself with a good support system of patient people. And I mean patient in every sense of the word.

Get ahold of a PAH Doctor immediately. Educate yourself. Knowledge is key. Friend other PAH-ers. Live your life to the fullest. Don't lie down and let the disease succumb you. Take the bull by the horns!

Log onto the PH Association website to find a support group in your area or find PH friends through the association helpline! Another vital tool is the PH Association Pulmonary Hypertension Survival Guide handbook. Don't try to read it cover to cover, but use it as a reference. It is an easy read, but lots of useful information! Give yourself time to adjust to the diagnosis. Wait on making major decisions for a while.

Find a specialist....and then educate yourself as much as possible. If possible, go to the Conference which is held every two years. There you will find a wealth of information.

Thank you all for your input on this. My mother was just diagnosed with PH in early October. There is so much info and we are trying to get through reading it all!

Don't make rash decisions and get ready to make tons of calls.

Take a very deep breath and concentrate on the positives in life exactly as it is! Then get to a research center and get yourself the best care possible!

Take care of yourself and let people you love help you do that.

this is doable...don't give up before you even start the fight!

Read the Pulmonary Hypertension Patient Survival Guide and ask your family and close friends to read it as well. It is important for you as a patient to ask questions of your doctors and PH specialists and it is also important for people close to you to educate themselves about PH. Find a support group near you, go to conferences and use the PHA website for the great resource that it is. You aren't alone. Knowledge is power!

Life is full of surprises: Mom was diagnosed 3 months ago she wish she could shake it off like a bad cold or like when she had cervical cancer after giving birth to my sister 30 years ago, or when she had a 17 -19 hour surgery to her jaw implants due to a robbery and it hasn't been easy she has bad and good days: we have learn to accept the illness, we won't allow for it to control us or her learn to live a day at a time and if she's tired rest if it's a good day knock yourself out!

Learn everything u can about it so you're not afraid. ask all the questions tell u understand it. join a ph grp it's the best support system 4 u and ur family. join pha so get the latest info on all medical treatments. then live life 2 the fullest each day u can so theres no regrets!

Get thee to a PH Specialist that treats many PHers of all ages.

to not worry, work closely with your doctor and talk with others who have PH.

Make sure you have some kind of support system...family, friends, neighbors...You will need them!! Let them help when they offer. They love you and are feeling helpless as well for you. You truly find out who your precious angels on earth are!!

Seek out a PH center....this is no common cold you are dealing with- go find the Best PH doctor even if it means traveling!

Research!!!

Hang in there and keep your faith. You are not alone.

Find a great doctor who knows what the disease is and how to treat it. There are lots of treatment options out there and more and more being researched, a great doc will help you decide which is best for you.

You will not be defeated!

Find a PH specialist ASAP. Go to phassociation.org and use the find a doctor link. Then order the survival guide.

Find a Doctor that treats PH. Check their credentials, how many patients he has and how long has he been treating patients with PH. Educate yourself about your disease. Be sure to ask any questions you need answered. Most important, be your own advocate.

Take it day by day. Always remember that you are not alone in fighting PH. You will have days that are bad and days that are good but always remember it takes one person to fight and that is "you"!

Ignore statistics and stay positive.

Stay off the Internet!

Don't get stressed (emotionally or physically). Stress worsens symptoms more than anything else. I am still learning how to let go of stress and anxiety. They are killers! (Easier said than done for some, I know.) I hope that more people understand this disease and especially those that are in your life, (makes for better coping on a daily basis, and that works both ways.) For me, anyway, if someone understands what this illness is etc... I am able to relax, better. Thus, understanding what others might feel like living with or knowing someone that has Pulmonary Hypertension.

Live Life to the Fullest...Be positive

take each day at a time work with doctors closely know all you options.

Having a great caretaker is a major help, stay positive and go about your life, there is no cure but it is very treatable, and the right medication can change your life! I am so thankful for my doctor and those around me, this is just something new you have to live with, and the world isn't going to end ; D

Keep living life to the fullest and do not ever give up hope.

Take one day at a time...Just breath.. Diagnosed Jan. 7th 2002 My 10 year Anniversary coming up!!!

Stay calm...don't freak out and immediately assume the worst. Focus on the word treatable. Find a specialist and go to them.

Stay as positive as you can and remember that with hope anything is possible.

See a PH specialist. Do not panic and do not believe everything you read or hear about PH.

Get with a support group and ask them questions. Finding people who have been living well with PH will help you stay positive.

Educate yourself so you can assist in your treatment.

ALL OF THE ABOVE! Educate yourself on PH every chance you get. My son's local lung dr told him that my son knew more than his own dr about PH. Be positive.

Take it day by day, and remember life is still what you make it ♥

Find someone to be your PH mentor

Awareness Month Victories: Pulmonary Hypertension Awareness on the Today Show!
11/17/2011

PH patient Maria Martuccio brought her family and friends to Times Square to be a part of the audience at the Today Show. Donning purple wigs and PH awareness tees, they were seen on the show with their various PH awareness signs. The Today Show reaches millions! Way to go Martuccio family and friends!

Maria Martuccio center with family and friends on Today Show

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

New Date: PHA’s Patient Telephone Support Group!
11/17/2011

Sometimes the holidays are stressful times. It always helps to have someone else to talk to, someone who understands what it's like having pulmonary hypertension. Want to chat with another patient? Can't make it out to a local support group meeting? PHA's patient telephone support group reaches out to those who can't make it to local meetings, whether because of health, work hours or distance. We usually meet on the 4th Thursday, but due to Thanksgiving, we'll be meeting on a Tuesday.

PHA's Patient Telephone Support Group

When: Tuesday, Nov. 22, 8 p.m. ET

Where: On the phone and online. The web portion is optional. You must dial in to participate. Details will be provided after you register.

Register now

Awareness Month Victories: Events, Events, and More Events!
11/16/2011

Our community continues to spread awareness and raise funds for pulmonary hypertension at Special Events around the country. Thank you to all the event organizers and volunteers who put in so much work to make these events such a success, and a whole lot of fun!

  • North Texas Fun Walk 20115th Annual North Texas Fun Walk – With their largest attendance yet, the fun walk included a 5k fun-run in addition to their traditional 1-mile walk. Dr. Kelly Chin and PHA Volunteer Services Director Debbie Castro spoke to the crowd during lunch, and participants could purchase raffle tickets for some amazing prizes – a flat-screen TV, digital camera, Dallas Cowboy autographed football, board games and toys. (group pictured right)
  • Inaugural Orlando PH Chili Cook-Off & Bake Sale – The Orlando PH Support Group raised well over $4,000 at their inaugural event! Besides some great food, they heard from Dr. James Tarver about PH, a great awareness opportunity for their community, but particularly for the newly diagnosed patients in attendance. (young attendee pictured below right)
  • Omaha, Neb., Phenomenal Hope for a Cure Brunch – Carol Lindstrom and the "Periwinkles" gathered about 160 attendees for some good eats and great fun. Guest speaker Colleen Brunetti received a standing ovation after sharing her story and message of hope.
  • South Florida PH Fun Walk 20114th Annual South Florida PH Fun Walk – Spearheaded by Pat Hellyer and the South Florida PH Support Group, this event had about 75 attendees, and all the PH patients present were honored during the lunch after the walk.
  • Greater Saint Louis Area PH Dinner and Wine Tasting – In addition to the good food (seems to be a theme with our events), the 175 participants at this event organized by Amanda McKee were treated to talks by Dr. Murali Chakinala and PHA Board of Trustees Chair Laura D'Anna.
  • 2nd Annual J. Patrick Garcia Breathe Easy 2011 – Over 120 people gathered in Albuquerque, N.M., for this 5k fun run/walk then gathered for a mix and mingle after the race. (group pictured below)
  • Vision of Hope Gala – Dinner, dancing, a fashion show, and compelling speakers... what more could you ask for? This gala in the Baltimore, Md., area was packed with 200 partiers, who were also educated about PH and what it is like to live with PH by guest speakers Dr. Myung Park, Betty Lou Wojciechowski and Vern Gore.

Breathe Easy 2011

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

Awareness Month Victories: PHA Facebook Community Grows to 5,000 PHriends!
11/15/2011

PHA's Facebook page is now reaching over 5,000 PHriends. Join the conversation if you haven't already! Follow PHA on Facebook

Then click on the Take Action section on the left to ask your Members of Congress to support the Tom Lantos PH Research and Education Act in solidarity with your fellow PHers who were up on Capitol Hill today for PHA's Annual Congressional Luncheon.

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

Awareness Month Victories: Hundreds Contact Their Members of Congress!
11/14/2011

Pam Carner, Sharon Rothan, David ZypThe Cincinnati Tri-State (OH/KY/IN) PH Support Group gathered 379 letters from their group and at an awareness table event at The Christ Hospital (pictured right) to send to their Members of Congress asking them to support the Tom Lantos PH Research and Education Act.

Representative Joe Wilson spoke on the House of Representatives floor about Pulmonary Hypertension Awareness Month on behalf of the PH patients in his district in South Carolina.

PHA's Annual Congressional Luncheon is taking place tomorrow. Invite your Members of Congress now! Your calls matter!

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

Awareness Month Victories: PHer Recruits All His Members of Congress for Congressional Luncheon
11/11/2011

George Harris, a PH patient in Connecticut, invited his two senators and his representative to PHA's Congressional Luncheon this upcoming Tuesday and all three RSVP'd. Representatives from the offices of Senators Joseph Lieberman and Richard Blumenthal and Representative Chris Murphy from Connecticut plan to attend. Way to go, George!

Your calls matter! Invite your senators and representative to this free event where they'll learn more about PH and how they can help. Send an invitation

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

What Pulmonary Hypertension Feels Like
11/10/2011

We asked people living with pulmonary hypertension to finish the following sentence: "Pulmonary hypertension feels like..." We heard back from people young and old about what PH feels like.

Editor's personal favorites:

  • An elephant sitting on your chest.
  • the best dang excuse to play video games I've ever had :D

Pulmonary hypertension feels like...

Prison

a very bad dream...

a death sentence.

drowning

An opportunity to help others with the same disease

nightmare

it's not fair!

Nothing more than an inconvenience and an obstacle to overcome!

An elephant sitting on your chest.

a challenge that does not and will not stop me.

Bitter sweet...

Life changing that I don't want.

A huge eye opener that life is very precious & too short!

hell at times!

My life has been taken away from me.

a never ending obstacle course! I won't let it take me down though!

A jail sentence!!!

You're wrapped in chains with a big ole padlock just out of reach!

A God-given test, and I'm not going to fail it!

A death sentence!!!! My life is gone!

well if my son could talk I think he would say it's my life (he is 4 years old )

There is a band wound tightly around my chest which will not allow my lungs to expand.

Something is strangling my lungs, so I can't breath

It's taking so much from my son

PAH feels like drowning in my own "lung juices".

Don't want to speak for my daughter (she's 12), but I'd say her PH diagnosis (though a major shock - she was 6 at the time) was an opportunity to trust in God's providence. We have met a lot of wonderful people through the PH community and CHOP, where she is treated. We have also witnessed the amazing power of prayer. My daughter almost died earlier this year, but she is alive and doing well - she is a true miracle.

the best dang excuse to play video games I've ever had :D

being in prison with your own body....

PAH feel like my number one reason to fight harder.

Shit!

special god chose me to have it and be a part of the cure process

life is very special & I'm going to enjoy every second while I can.

Nothing inside me. I'm screw

a daily challenge to work past and enjoy the day. And every morning, wake up and thank your God, that you have another day to enjoy.

Never getting enough air into your lungs.....Yes, it is being in prison with your own body...

I am someone sitting on your chest 24/7 it's not fair, I cry a lot.

frustrating!

The oxygen is an inconvenience; I am willing to live with that! It's been 10 years now - I will never give up

E) all of the above. :(

Yes...all of the above!

La vida va mas rapido de lo que yo desearía

‎...a battle to win my life back. And I WILL WIN!

I do not have PH but here is what [my daughter] (9yrs PHer) said last night... "Mom I do not want to die.. I do not like being different from my friends, I do not like being too tired to play the games my friends play, I do not like the shots, My bandage itches, I have pains in my chest, My shoulders are achy (from I.V. back pack), Why do I have to take so many pills, I wish my stupid pump was gone, I am just tired of not being NORMAL :(" This was on a good night.

Is nothing I ever imagined but has taught me a lot about myself, tested my faith and strength but I stand tall, it constantly knocks me down but I always get back up....so to you all let's embrace this struggle and help each other overcome it....stay blessed positive and strong XOXO

[name removed for privacy] I love your comment I was in your daughter's situation and almost died (I was 30) but through the power of prayer and being blessed with great doctors ... I'm still here and I'll be 32 on Thursday

Oh [name removed for privacy], that is terrible... These kids are way too young to endure this pain... I'm sorry, I hate this disease for all of us that live it on a daily basis. With all the new stuff coming out and being studied I Pray we find a cure... ♥ to u all!

I fought PH for 20 years and I am familiar with all these comments. 3.5 years ago I got a double lung transplant and am healthy now. I keep helping and praying for a cure. May you all be blessed.

My aunt was an inspiration. She had P.H for 6 years and she never once complained about it, even though she had a very poor quality of life near the end. She fought for her life every day, and yet would still ask how ru today? She still managed to enjoy every min of her life, and went on holiday and took her grandson out as often as she could manage! She helped shape part of the study trial combos do that others will have a better quality of life. I'm so very proud of her, and miss her every day! Live and love, that's what fights this terrible disease! Xxx

Like having something heavy on your heart and lungs

Wife tells me it feels like our six year old sitting on her chest all day long

Elephant on my chest! Days with cold winds are a b&*@ch!

carrying 25# with clamps tightening on your chest

With the oxygen, I feel like a Dog on a leash!!!

‎...just another challenge to overcome to show me what I'm made of.

Like I'm old before my time...I was 24 when diagnosed. I'm 30 now and I still look good....lol

A never ending burden

A reminder that life is precious and to enjoy every day that you have.

PH feels like one day it just came into my life and decided that it was going to stay!

My 16 yr old son would probably say annoying, since he has to stop what he is doing and take his neb

I'm going to get old too quickly and my young children will never understand why mom is truly sick and my husband will lose his last patience. I feel fine now - but I dread what the future brings.

PH will not control my life I vow to control my PH!

‎...I'm running a marathon nonstop. Trying to keep up with 4 little boys and the tornado that follows them...feels like I just ran a marathon and I'm going to run another tomorrow. Oh JOY! =D

An ongoing struggle but each day gets a little better!

Running up and down stairs for at least 10 minutes on an empty stomach with no sleep, and when you sit down to "rest and catch your breath" your heart pounds harder and as you're already sitting down, you still feel like you might pass out. It also feels like you're hyperventilating and sometimes that is a result (from trying to catch your breath) but it's really not "air" you're lacking it's oxygen.

It slows down everything u want to do, because you are too tired, too fatigued, and lack energy!

Someone asked is the cold weather worse?? for me it is yes. I struggle to breathe more, I get sick more often, I have this pain in my chest that will not go away, and it hurts all the time.

I am holding my breath and going about my life...never get enough air!

I am not as active as i should be

My Husband will say a constant challenge, but I know this has helped us appreciate how precious is life and enjoy as much as we can. He is a fighter and we will control it together.

trying to navigate through mud!

trying to breathe when someone is covering your mouth

running up stairs for 10 minutes after no sleep or eating (a weakened state) and then sitting down to catch your breath, (but it's not air you're really lacking, its oxygen) and your heart keeps pounding harder (even after you have sat down) and the more you breathe the more light headed you feel because it's like hyperventilating.

it feels like somebody sitting on my chest, it's just not fair...I get so upset sometimes...some people just don't understand...

I got hit by a bus and the flu times ten!

Crap!

I am carrying a ton of extra weight all the time (& I'm underweight).

against all odds.....

Something I can't describe it's horrible the way it Creeps up on u!!!

My worst enemy attempting to kick my ass, but I keep getting back up & fighting back. #WeAreFighters

the highest mountain ever that I will never get to the top, but one day I WILL!! I am the lil engine that could...

It wants to take over my life but I will not let it!

‎...my normal state of being now.

Kansas City News Alert - Tune In Friday Night on Fox
11/10/2011

PHer Jim Gebhardt will be on Fox Channel Nightly News at Nine tomorrow, Nov. 11, discussing pulmonary hypertension in an interview with Health and Medical Editor Meryl Lin McKean.

Awareness Month Victories: Special Events Galore!
11/9/2011

PHers around the country are holding special events to raise awareness and funds for the cause this Awareness Month. Event organizers work hard in November and throughout the year to plan great events, large and small. Thank you, event organizers! Here we highlight just a few from the past week. More to come!

Jack's board of directors photo
before
Jack "the Ragin Cajun"
after

Jack "the Ragin Cajun" Stibbs

Jack Stibbs, a PH parent and PHA board member, arm wrestled another attorney to raise awareness and funds for pulmonary hypertension last week. As Jack entered the arena, necklaces were thrown into the crowd with information about PH and Jack's upcoming crawfish event attached. Jack certainly got into the spirit with a fun wrestler costume (see right along with the before photo of what he normally looks like).

Pubcrawl in Baltimore

The "3rd Annual Pulmonary Pints: Pubcrawl for PH" was held this past Saturday, November 5, in the Federal Hill area of Baltimore, Md. The event attracted 115 beer-enthusiasts and PH advocates, and raised around $6,000 for research and programs. The event was organized by sisters Katy Hayes and Ashley Boehk in memory of their mother Katherine. Take a look at the T-shirts they wore for the pubcrawl to spread awareness to fellow pub patrons.

PHun Walk in Albuquerque

The "2nd Annual Abby's Road PHun Walk" took place this past Sunday, November 6, in Albuquerque, New Mexico. The event is held in memory of Sacha Blair and Frances Savage, and is named in honor of Sacha's daughter Abby. The event included a puppet station (photo right) and raffle.

TV Coverage in Omaha

Carol Lindstrom and Josh Griffis, who are both living with pulmonary hypertension, appeared on a local Nebraska television program, The Morning Blend, to educate the public about PH. They spoke about the need for early diagnosis, symptoms and treatment. They also told viewers about the "Phenomenal Hope for a Cure Brunch," coming up this Saturday. Watch video of TV coverage | Learn more and register for the brunch

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

Awareness Month Victories: Purple Pride and PH Week at ATS
11/8/2011

Our victories this month are happening nationally and locally...

PH Week at the ATS

In conjunction with the Pulmonary Hypertension Association, the American Thoracic Society has a section on their website dedicated to pulmonary hypertension educating patients, caregivers and medical professionals. As part of this partnership week, PHA is presenting a webinar on ThursdayImproving Patient Outcomes and Early Diagnosis: An Examination of the REVEAL Registry – a rare opportunity to hear from five of the nation's leading PAH physicians on groundbreaking data from the REVEAL Registry about trends in PAH patient care, the need for early diagnosis and other research recommendations. Register now

Mahwah High School Purple Pride

The mascot of the Mahwah High School football team in New Jersey is Vinny Accurso, an eight-year-old living with pulmonary hypertension whose brother Anthony is a player on the team. On Friday night the entire stadium wore purple to the game in support of Vinny and Pulmonary Hypertension Awareness Month. The community's show of support for Vinny and PH awareness led to two articles in the local Mahwah Patch: here & here.

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

New Guidelines for Treating Pulmonary Hypertension and Venous Thromboembolism
11/8/2011

11/4/2011 (URMC) - URMC doctor R. James White, M.D., Ph.D., helps establish new guidelines for treating pulmonary hypertension and venous thromboembolism. Watch the video

Awareness Month Victories: Minn. Proclamation and Sarah Smiles Fun Walk in the News
11/4/2011

Official proclamation declaring November 2011 as PH Awareness Month in MinnesotaYour successes continue!

This Saturday, November 5, the Peek family is hosting the Sarah Smiles Fun Walk for PH in Camillus, N.Y. The event is named for Sarah Peek, who passed away from pulmonary hypertension in 2010 at the age of 7. Sarah's story was featured in the Syracuse, N.Y., Post Standard this Thursday. The article raised much-needed awareness about pulmonary hypertension, and included a quote from PHA's President Rino Aldrighetti who said of the Peek family, "They are our heroes." Read the article | Learn more about the event

Lois Piper successfully obtained an official proclamation declaring November 2011 as PH Awareness Month in Minnesota by Governor Mark Dayton. Way to go, Lois! See the proclamation right >>

We'd love to hear what you are doing. Tell us about your victories, large and small. Contact Diane@PHAssociation.org

Awareness Month Victories: Online Awareness, Proclamations, News Coverage, and More!
11/3/2011

Pulmonary Hypertension Awareness Month is off with a bang! We're getting emails and phone calls from across the country about how members of the PH community are spreading awareness in ways big and small, truly demonstrating the Power of One, our 2011 Awareness Month theme! One woman told us that she passed out information about PH to trick-or-treaters with Halloween candy. Great idea! Here are just a few of the places that we've already made noteworthy victories:

  • Online. On November 1, PHers kicked off Awareness Month with PH Online Awareness Day, spreading awareness about PH through their online networks. Over 530 people RSVP'd for the event on Facebook alone.
  • In print. The Portland Press Herald ran a story about Ava LaBarge, a five-year-old living with pulmonary hypertension in Bridgton, Maine. Read the article
  • On television. PH patient Patty Kaiser was featured in the "Show Me St. Louis" segment on KSDK NewsChannel 5 on November 1. Patty raised awareness about pulmonary hypertension, the importance of early diagnosis, and the Greater St. Louis area Dinner and Wine Tasting, an event on November 12 that will raise money to support patient services and programs at PHA. Watch the video | Learn more about the event
  • Down at town hall...and the governor's office! PHer Alex Flipse didn't just get a proclamation declaring November PH Awareness Month from her local government in Takoma Park, Md. She also garnered one from Montgomery County and the state of Maryland. Kudos, Alex!

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org.

Hear How PHers Felt When They Were Diagnosed
11/3/2011

We asked people living with pulmonary hypertension to finish the following sentence: "When I was diagnosed with pulmonary hypertension...." We heard back from people young and old about what it felt like to hear that they had PH.

When I was diagnosed with pulmonary hypertension...

I was relieved to finally know what was plaguing me.

I thought what the hell is pulmonary hypertension?

I did a whole bunch of reading and praying.

I was overwhelmed! I was pregnant with my fourth child when I found out I had pulmonary hypertension. Everything for the next 2 months was dealing with the unknown and I spent all that time in the ICU. I had a lot of time to think while I was in the hospital; I was angry, sad, frustrated, and I guess even relieved to some extent. I had been telling doctors for years that I wasn't feeling right and finally I knew why. That also made me angry because if someone would have taken me seriously earlier then it wouldn't have gotten so bad before I was able to get treatment. Now I do the best I can and try to live each day to the fullest for my four boys.

I was glad to finally know what's wrong but angry that it wasn't something that could be "fixed."

I was overwhelmed with emotions that I had never experienced before.

I was upset. I thought they had fixed my heart with surgery but this was something they couldn't fix.

I had just turned 19 years old and was given 2 years to live. This was exactly 18 years ago! I was put on Flolan which was experimental at the time as a bridge to transplant. That bridge was very very long as I didn't need a transplant until 2007! I never let this crazy disease stop me! And I've led an incredible life!

I was angry because it was brought on by an accident during heart surgery but I got over the anger and am now thankful to God everyday for allowing me to wake up to have another wonderful day with my family and friends!

I was very angry, and upset that I wouldn't live to enjoy my grandchildren.

When I was diagnosed with PAH, I was feeling lots of emotions: sadness, shock, fear, but also relief (a diagnosis that "fits"). I have a reason for why I take all those meds and why I feel tired all the time, but look "normal."

I was confused. I was moved to ICU for the next 10 days and started on Remodulin. All I could think was I hope I live through this. That was almost 2 years ago. It's a great day to be alive!!!

I felt a little fearful at first, then glad of a diagnosis so I could get treatment. Mine is secondary to sarcoidosis. I am used to the "normal" look, but I'm glad I "look" better than I feel sometimes. I'm THANKFUL!!!

I cried thinking I would never know my future grandchildren.

I knew I was SOB (short of breath), but had never heard of pulmonary hypertension. Initially I was upset, and then started reading. That reading scared me up front - I would stop and not read for a few days, then pick it back up. I've always had bad asthma and allergies, so I thought it was getting worse.

I was relieved to finally know what was wrong with me. Now I knew what we were dealing with after a string of mid-diagnoses. I am blessed with a wonderful support system and a terrific medical team. I have good days and bad but the good far outweigh the bad. Every day is a gift and I have learned to take nothing for granted. Sending prayers out to all who are affected by this horrible disease!

I was excited to finally have an accurate diagnosis and get on medication. I was passing out for 9 years and it all stopped once I began treatment. It was horrible to have something wrong with no relief for so long. Relief came in the form of a big blue pill! :)

I was so angry at every doctor that ever missed the heart defect I was born with, I could have screamed! (I was 57 when my cardiologist discovered it.) I have secondary PH because of that defect. But now I'm on oxygen, Adcirca, and Letairis and feeling pretty good most days. I go to pulmonary rehab twice a week, working out on the equipment there and have met so many friends there, with so many different lung problems. We all watch out for each other there and keep tabs on one another when one of us is out for a couple weeks or more. We actually have fun and our nurses are terrific! Here's hoping they find better treatments soon!

I was 16. I was overwhelmed, because I didn't know what was going on. I kept asking my mother about the mysterious thing the doctor had found. My mom said, "Pump medicine will make you feel better." I didn't understand why, but a few months later, my mom told me the truth—that it was a rare disease called pulmonary hypertension. I was disappointed, but I'm glad to have treatment for 10 years keeping me alive. I am happy and smiling.

I cried. I knew PH was what my mother died from in 1992. It was 2003, and I was put on Flolan, Tracleer, and then eventually Revatio. I was also listed on the transplant list that same month. I waited 8 years for a transplant. I received my transplant in June of this year.

I was told I wouldn't see my 30th birthday. In 17 days I'll be 30.

I was 26. Working full time, carrying 6L of water throughout my entire body, in congestive heart failure and days away from not being here on this earth. Thanks to Flolan and my awesome PH doctors, family, friends and all the hope and support from fellow PHers, I'm still able to live life!

I was only 7 but knew something was wrong since birth. I didn't understand anything and was really brave.

And that was I wouldn't see my 30th without double lung transplant....But I haven't needed transplant yet, and my pressures are dropping on treatment.

I didn't understand what PH was and was so happy that the doctor did not find anything wrong with my heart that I cried tears of joy at that moment. Then I found out what PH was and then the side effects of PH began to manifest more and more that's when I realized that it was serious.

I thought how can they keep me alive long enough to see my baby grow. Thankfully I have treatment that is prolonging my life.

I was thrilled. I thought, OK -- now that they know what it is, they'll fix it and I'll be well. Little did I know....

I was clueless about the reality that is PH. I'm truly thankful for my healthcare team, PHAssociation.org and my PHriends...each have educated me, cared for me and walked with me through this journey so far.

I thought I would not survive long. (More than 10 years ago now!)

I was told I would be dead within two years. I was just devastated.

My world went black for an instant then my faith in God came shining through. Now it's 13 years later and I'm still kickin', thanks to Flolan and an awesome doctor and his staff and most of all thanks to GOD!!

I came home from the hospital and I saw all of those discouraging comments on the internet telling me I would be dead within one to three years. It now has been five and a half years and I am still alive. Thanks to Duke Medical Center, I am stable and have gone back to school to finish my coding degree.

It was Christmas Eve 2004 and it hit us all hard. Hubby was planning retirement, we were about to book the trip of a lifetime for 3 months overseas and I was told NO travel in the foreseeable future. Our world was turned upside down in one minute. Here I am nearly 7 years on and stable thanks to fantastic specialists, PHA, PHA Australia and PHA UK.

Blue Lip Ladies Video
11/3/2011

11/1/2011 (KSDK) - The 2011 PHA Dinner and Wine Tasting Fundraiser is on Saturday, November 12, at 5 p.m. at the Sunset Lakes Golf Club, St. Louis, Missouri. Watch the KSDK News video | View more information in the PHA Events Calendar

Bridgton Girl Fights Ailments With a Smile
11/3/2011

11/2/2011 (The Portland Press Herald) - Five-year-old Ava LaBarge has been through a lot, but you wouldn’t know that from the smile on her face. Spinal surgery, four brain surgeries, a stroke – the Bridgton girl has suffered them all. Among a slew of conditions, young Ava has chronic pulmonary hypertension. Read article

Joint PHA/ATS Webinar on Groundbreaking Data from the REVEAL Registry
11/3/2011

Improving PAH Patient Outcomes and Early Diagnosis: An Examination of the REVEAL Registry
Thursday, November 10
3:00 p.m. ET
Webinar (phone AND web)
Register now

Join five of the nation's leading pulmonary arterial hypertension (PAH) physicians on Thursday, November 10, as they present groundbreaking data from the REVEAL Registry about trends in PAH patient care. This research suggests that despite a range of available therapies, patients in the United States still experience significant delays in diagnosis. Panelists will discuss the need for early diagnosis of PAH and more of the latest research recommendations to improve patient outcomes.

This Pulmonary Hypertension Awareness Month webinar is a partnership between the Pulmonary Hypertension Association and the American Thoracic Society in recognition of Pulmonary Hypertension Week at the ATS, November 6-12. The presentation is open to all, but will be of special interest to medical professionals and PAH patients and caregivers.

The REVEAL Registry is a multicenter, observational research study of PAH patients. Over 3,500 patients are enrolled in the U.S.-based registry, making it the largest PAH study in the world.

Register now!

Nov. 1 is PH Online Awareness Day!
11/1/2011

Get Involved in PH Online Awareness Day on November 1

Kickoff Pulmonary Hypertension Awareness Month from your computer on November 1! Spread the word about pulmonary hypertension to your friends, family and the world on Facebook, Twitter, your blog or via email. Share your story and facts about pulmonary hypertension with your online networks, and encourage them to share or repost to their networks.

Some ideas to get you started:

PHA Makes Online Awareness Easy!
Carry the momentum of Awareness Day throughout Awareness Month in November and all year round by making regular posts. You can find ideas by reposting messages from PHA's Facebook page or Twitter feed.

Join the PHA Online Messengers email group to receive regular messages to share with your online friends

Learn more about how you can Fight for the Cause Online

UK (University of Kentucky) Healthcare Surgeons First to Perform Novel Procedure for Transplant Patient
10/31/2011

10/29/2011 (KyForward) - The patient “feels like a miracle,” after surgeons at UK HealthCare recently became the first ever to perform two specific procedures together as a bridge to lung transplantation. Read article

CHEST: Study Looks at Sildenafil Dose for Youth With PAH
10/31/2011

10/24/2011 (Doctors Lounge) - Medium doses of sildenafil may be beneficial for children with pulmonary artery hypertension, according to a study presented at the annual meeting of the American College of Chest Physicians, held from from Oct. 22 to 26 in Honolulu. Read article

FDA Drug Safety Communication: Sprycel (dasatinib) and Risk of Pulmonary Arterial Hypertension
10/17/2011

10/11/2011 (FDA) - The U.S. Food and Drug Administration (FDA) is warning the public that the leukemia drug Sprycel (dasatinib) may increase the risk of a rare, but serious condition in which there is abnormally high blood pressure in the arteries of the lungs (pulmonary arterial hypertension [PAH]). Information about this risk has been added to the Warnings and Precautions section of the Sprycel drug label. Read article

A Vision of Hope: Awareness Month Gala to Benefit PHA
10/14/2011

On November 12, the Vision of Hope Gala will take place in Baltimore, Md. This festive event, featuring speakers Dr. Myung Park (University of Maryland) and Betty Lou Wojciechowski (former member, PHA Board of Trustees) will raise research dollars to benefit PHA’s extensive Research Program. A silent auction, raffle, dinner & dancing and PH-themed fashion show will also be featured.

Join us! Tickets are available for purchase online or by phone at 443-677-3729. PH patients and caregivers - $50. All others - $100. We do have a number of complimentary tickets available to patients and their caregivers! If interested, please email Events@PHAssociation.org or Nicole at schlease@hotmail.com.

Hope to see you there!

No Need to Perfuse Brain in Pulmonary Endarterectomy
10/14/2011

(MedPage Today) - During pulmonary endarterectomy for chronic thromboembolic pulmonary hypertension, continuously maintaining brain perfusion provides no advantage in cognitive function compared with periods of deep hypothermic circulatory arrest of up to 20 minutes, a randomized trial showed. Read article

Teen in Virginia Lobbies for Transplant Education Law
10/7/2011

10/06/2011 (NBC 29 WVIR) - Organ donation is a cause very literally close to Madison Shinaberry's heart.  The Harrisonburg teen received a double lung transplant in 2009, and Thursday she's lobbying state legislators to pass a law encouraging more donation and transplant education for high school health students. Read article and watch the video

Molecules to Medicine: Clinical Trials for Beginners
10/7/2011

(Scientific American Blogs) - From the Guest Blog entry: "Have you ever wondered about the medicines you take—how they are developed and produced? We’ll explore that in “Molecules to Medicine.” This new series could be described as “medicine for muggles,” intended to take the mystery out of clinical research and drug development and to provide background information so that both patients and physicians can make more informed decisions about whether they wish to participate in clinical trials or not." Read article

Caregivers’ Stress Leads to Unhealthy Habits
10/6/2011

10/2/2011 (HealthyCal) - Craig Sheffer, 52, of Santa Rosa knows, professionally and personally, about the stresses of caregiving. As the father of an 18-year-old daughter with severe pulmonary hypertension, Sheffer has learned how to cope with the intensity and demands of caregiving. Read article

Making a difference...
10/5/2011

The following is a copy of an entry from PHA President Rino Aldrighetti's blog: Empowered by hope - a PHA diary

NorwayMaking a difference...

In recent years, our friend Hall Skara has been building PHA Norway into an effective voice for pulmonary hypertension patients in his country. It's a great effort in a nation where there are not many diagnosed patients.

On September 25, PHA Norway held their national conference. the event generated good press coverage and and the 11:30 minute TV interview below. Many thanks Hall for subtitling the interview in English!

 

I really enjoy blogging about PHA Norway. They are a great example about how even a small community of patients, family members and medical professionals can make a difference.

Learn more about how PHA Norway got started and about the international PH community.

 

Women with Pulmonary Arterial Hypertension Have Greater Response to Treatment than Men, Penn Study Finds
9/30/2011

9/27/2011 (Penn Medicine) - Pulmonary arterial hypertension (PAH) patients of different sexes and races may respond differently to treatment with commonly used medications for the disease, says a new study from researchers at Perelman School of Medicine at the University of Pennsylvania.The results of the study are published online ahead of print in the journal CHEST. Read article

Sildenafil Appears safe and Effective for Eisenmenger Syndrome
9/27/2011

9/23/2011 (Heartzine) - In a study published by the journal Heart, researchers based in China led by Professor Zhi-Cheng Jing of Tongji University School of Medicine report that over a 12 month period, sildenafil treatment (oral administration) for those with Eisenmenger syndrome (a shunt-related congenital heart defect which leads to PH) was both well tolerated and appeared to improve key performance measures. Read article

Novartis Study Shows QTI571 Significantly Improved Walking Distance in Patients with Life-Threatening PAH
9/27/2011

9/26/2011 (Pipeline Review) - Novartis announced new data today from the pivotal Phase III IMPRES clinical trial showing that the investigational therapy QTI571 (imatinib) significantly improved exercise capacity in patients with pulmonary arterial hypertension (PAH) after 24 weeks compared with placebo(1). Evidence indicates that QTI571 targets an underlying cause of PAH by counteracting uncontrolled growth of arterial smooth muscle cells(2). Read article

Denver-area PH Run for PHun a Huge Success; Hundreds Involved
9/23/2011

30 walk teams. 400 registered. 28,305 PH research dollars raised by PH patients, walkers, runners, family and friends for the Colorado PH Run for PHun on Sept 18. Thanks to our Colorado “PHriends” for bringing all of us one step closer to a cure! 

The walk itself was preceded by a flurry of media activity in the Denver area, including two local television spots that featured stories from both children and adults living with PH. PHA Scientific Leadership Council member, Dr. Ivy and Scientific Leadership Council Distinguished Advisory Committee member, Dr. Badesch, played a role in both spots:

Channel 7 News - 11-Year-Old Lives With Pulmonary Arterial Hypertension. View now

Fox News 31 - Highlands Ranch woman raising awareness of pulmonary hypertension. View now  

Estrogen Treatment May Help Reverse Severe Pulmonary Hypertension
9/19/2011

9/15/2011 (eurekalert) - UCLA researchers have found that the hormone estrogen may help reverse advanced pulmonary hypertension. Published in the Sept. 15 issue of the American Journal of Respiratory and Critical Care Medicine, the preclinical study shows that in rats, estrogen treatment can reverse the progression of pulmonary hypertension to heart failure and can restore lung and ventricle structure and function. Read article

PH patient in South Africa: "I'm being given a second chance at life"
9/7/2011

9/6/2011 (Independent Online) - Everyone should meet Tina Beckbessinger. She is an absolute inspiration. At 30, when most women are looking forward to a full and healthy life, Tina has only a single mission - to remain strong enough to undergo a heart-lung transplant. Tina hopes by sharing her story to increase awareness surrounding organ donation in South Africa and in particular, the critical shortage of donors. Read article

Get Tips on How to Explain Your PH
8/30/2011

Telling Your Story: Explaining PH to Friends, Family and Coworkers
Thursday, September 1, 6:00 p.m. ET/3:00 p.m. PT

Join us on this webinar as Amanda Harvey-McKee and Brit Riggins share their experiences with telling their PH stories. They will discuss tips for helping others understand PH whether they be family members, friends or coworkers and strategies for explaining limitations and communicating about PH. Please come with your own tips, suggestions and any questions you might have! Register now 

Dr. Donohue: High Blood Pressure Affects Lungs
8/30/2011

(STLtoday) - Read a follow-up letter to Dr. Donohue's earlier column answering a question on PH: "All the doctors I saw scratched their heads. Then I read your article on pulmonary hypertension. Everything fit my picture. I asked two docs to consider it. They said it was unlikely, because it was so rare. Yesterday the heart doctor gave me a stress test with ultrasound." Read article

New Study Will Explore Impact of Exercise on Pulmonary Hypertension
8/30/2011

8/26/2011 (Univ. of Wisconsin) - Funded by a four-year, $2.5 million grant from the National Institutes of Health, Naomi Chesler, an associate professor of biomedical engineering at UW-Madison, will investigate the relationships between small artery narrowing, large artery stiffening and their interactions with the right side of the heart in patients with PAH. Read article

United Therapeutics Will Move Forward With FDA Filing For New Drug
8/25/2011

8/24/11 (Metro Business Media) - United Therapeutics Corporation released its FREEDOM-C(2) Phase 3 clinical trial results today but the company announced that the study did not meet its primary endpoint. Oral treprostinil (treprostinil diethanolamine) is next in the pipeline of drugs to treat PAH. United Therapeutics said that the tablet form of treatment for PAH did not post any statistical significance in the FREEDOM-C(2) trial. Read article

16 Tips to Help You Shake Your Sodium Habit
8/24/2011

Did you know that milk, parsley flakes, aspirin, and some brands of toothpaste and mouthwash contain sodium? If your doctor has advised you to follow a low-sodium diet, don't forget to read your labels! Read more tips

PHA on the Road: Session Recordings Now Available
8/24/2011

Select sessions from the Minneapolis, Minn., PHA on the Road forum on June 18 are now available online. Session topics include How is PAH Diagnosed, Understanding Transplant Options, PH and Connective Tissue Disease and more. Continue your education at PHA Classroom

Shop Online with August Fundraisers
8/23/2011

From Special Event Organizer Lindsay Collins:

Hello PHriends,

Sweet Peas & Snuggles, Scentsy, and Jody's Watches are all having online fundraisers to benefit Colorado's 2nd Annual Run for PHun on September 19, 2011. This event will be sponsored by the Childrens Hospital Colorado, The University of Colorado Hospital, and The Pulmonary Hypertension Association. It is a "fundraiser for a fundraiser" if you will.

These are ONLINE fundraisers. All you have to do is go to websites listed below and follow the directions provided. You will be able to purchase any item and a percentage of all sales will go directly to the Pulmonary Hypertension Run for PHun. If you would like to make a monetary donation instead of a purchase, please contact the seller directly (see below) or go to: http://www.firstgiving.com/phassociation/Colorado5K.

Pillow Pets & Snuggles may be purchased through the following website:
www.SweetPeasandSnuggles.com
Use code: PHunRun2011 to have 15% of your purchase donated to the Run for PHun
They ship to any address and shipping is free for purchases over $100.
Seller: Shantrell Kramer 703-554-7396 or peasandsnuggles@aol.com

To order Scentsy products go to:
www.Shantrell.Scentsy.us
Order directly under the party "PHun Run"
Seller: Shantrell Kramer 703-554-7396 or nurseshanti@aol.com

Jody's Watches can be found at:
http://jewelrywonder.com/jodyswatches
Everyone knows someone who enjoys jewelry!
Seller: Jody Miller 720-244-4048 or jtani10@aol.com

THIS FUNDRAISER LASTS FROM AUGUST 1 THROUGH AUGUST 31......SO DON'T MISS OUT.

For more information about the PHun Run please go to: http://www.firstgiving.com/phassociation/Colorado5K

If you have any questions about this fundraiser, please feel free to contact:
Lindsay Collins at 720-297-4626, lcollins23@msn.com or Christine Kramer at 303-475-0727.

Healing Heart Defects: Indigent Parents in Nigeria Cry Out for Help
8/23/2011

8/21/2011 (Vanguard) - Mercy Ogbosu was distraught when she took her 10-year-old daughter, Christiana, to the Lagos University Teaching Hospital (LUTH), Idi-Araba, in August 2010, and was told the little girl had a hole in the heart. Read article

Diagnosing and Treating PAH
8/19/2011

8/18/11 (The Egyptian Gazette) - One such disease is pulmonary arterial hypertension (PAH). It is caused by a continuous narrowing and clogging in pulmonary blood vessels, which leads to high blood pressure of the pulmonary arteries. According to Dr Awad Tag el-Din, Head of the Egyptian Association of Pulmonary Diseases, PAH is very dangerous in afflicting these pulmonary arteries that connect the lungs with heart. Read article

Details of Updated UK Heart Failure Guidelines Raise Some Eyebrows
8/19/2011

8/17/11 (Forbes) - Much of the controversy revolves around the relative weight given to echocardiography and natriuretic peptides in the diagnosis and treatment of heart failure. The updated NICE guidelines recommend that for the diagnosis of heart failure in patients with no history of MI, echocardiography should be used only if natriuretic peptides are raised. Peterson and Rumsfeld point out that both the ESC and ACC/AHA guidelines recommend that all patients with the signs and symptoms of heart failure should have an echocardiogram. The NICE position, they say, “may be questioned because of the utility of echocardiography for not only measuring left ventricular function but also for detecting structural or valvular heart disease, pulmonary hypertension, and pericardial effusion.” Read article

Device Gives Heart Disease Patient an Improved Way of Life
8/19/2011

8/15/11 (Argus Leader) - For Gustafson, it all began eight years ago when he noticed his legs were swelling and he was short of breath. During a physical work-up, it was discovered that he had hypotrophic cardiomyopathy, a hereditary heart disease. The condition often goes undiagnosed because symptoms are usually mild, according to mayoclinic.com. Not so with Gustafson. The disease caused the walls of his heart to thicken, making it inefficient. "It can't pump the volume it should," he says. Organs suffered, he developed pulmonary hypertension and his kidneys went into failure. Read article

Evidence for the Role of Haptoglobin Phenotypes in Toxic Oil Syndrome
8/19/2011

8/15/11 (spectroscopyNOW.com) - It is now 30 years since toxic oil syndrome struck in Spain with devastating consequences. It is a food-borne disease that is estimated to have killed at least 2500 people with thousands more affected to this day with different degrees of disability. There was a swathe of acute symptoms which developed into chronic conditions such as motor neuropathy, musculoskeletal pain, sclerodermia, pulmonary hypertension, liver impairment, hypothyroidism and diabetes mellitus. Read article

Date Set for Boy's Heart Operation
8/19/2011

8/11/11 (Press-Telegram) - A tentative surgery date has finally been set for an impoverished Cambodian boy in need of an open-heart operation. Children's Hospital Los Angeles has set Sept. 6 as the likely date for the surgery for Bunlak Song, according to Peter Chhun, whose nonprofit is sponsoring the boy. Read article

High Blood Pressure in Lungs Can Pose a Danger for Women
8/19/2011

8/11/11 (stltoday.com) - A recent study has shown that pulmonary hypertension, or abnormally high blood pressure in the arteries of the lungs, affects about four times as many women as men in the United States. One of the most alarming findings of the study is that those with the disease were likely diagnosed many months after the first sign of symptoms. Read article by PHCR member Dr. Neil Ettinger

Conference Research Room Helps Researchers Develop New Tests for PH Patients.
8/12/2011

Georg Hansmann, MD, PhDAn interdisciplinary group of researchers from Boston have developed a microfluidic device that can test for the number of beneficial circulating endothelial progenitor cells (EPCs) in the blood stream of patients with cardiovascular disease. The number of EPCs in the blood can be used as a biomarker for risk assessment, disease progression and the response to therapy.  Up to now, the measurement of EPCs in the bloodstream was very difficult and laborious and therefore, not very useful to physicians working with PH Patients at the bedside.

Dr. Hansmann and colleagues have attended the research room at PHA’s 2010 International Conference to apply the so called "EPC Capture Chip"  in over 40 patients with PAH. They found the EPC numbers in PAH patients to be half the number in healthy controls.  The new EPC capture chip has tremendous potential for serving as a rapid bedside tests to monitor treatment and disease progression. The research team includes: Georg Hansmann; B.D. Plouffe; A. Hatch; A. Von Gise; H. Sallmon; Roham T. Zamanin; Shashi Murthy. Read abstract

Michigan Woman Fights Pulmonary Hypertension in the Water
8/8/2011

8/5/2011 (MLive) - When 79-year-old Veronica Greason looks around the pool at the Midland Community Center, she knows she’s working 10 times harder than the “floaters” bobbing up and down for exercise. “I call them floaters, because they just kind of hang out and talk in one place and call it exercise,” Greason says as a puff of oxygen pumps through her nose. Read article

Living with Scleroderma - Video from AM Northwest
8/1/2011

7/25/2011 (KATU) - Christina Current Fidalgo, Fay Maushard and Donna Stone describe what it's like to live with Scleroderma and how people can help fund research for this disabling disease. Read article and watch the video

PHA Debuts NEW Survival Guide
7/25/2011

PHA is proud to debut the updated and totally redesigned 4th Edition of Pulmonary Hypertension: A Patient’s Survival Guide, PHA’s resource text for patients and caregivers!

The new 4th Edition features five revised chapters, including:

  • Diagnosis
  • PH drugs
  • Surgical treatments
  • Children, teens and family planning
  • Insurance and legal matters

The book also has a brand new chapter written just for PH caregivers.

You can purchase your new copy now at the PHA Store! The book is $15 for PHA members and $25 for non-members. Visit the PHA Store or call PHA at 301-565-3004 to order your copy now!

10 Year-Old PH Patient sees a String of Successes After PH Diagnosis
7/25/2011

7/24/2011 (nj.com) - The last six months for Randy Ramos can be summed up by a two-foot long strand of beads. The red spheres mark every blood transfusion the 10-year-old has received since he was diagnosed with pulmonary hypertension early this year. Read article

Transplant Pioneer Celebrates 19 Years of Health
7/25/2011

7/22/2011 (Saskatoon CTV News) - It was 19 years ago that Sherry Duncan Paterson underwent a double-lung heart transplant, making her a pioneer in the Canadian transplant world. 19 years ago, after the birth of her second daughter, Paterson was diagnosed with a rare disease called primary pulmonary hypertension. Read article

Take Action: Advocate for NIH and CDC Funding Before July 26!
7/19/2011

Contact your representativeThis coming Tuesday, July 26, the House Labor-HHS-Education Appropriations Subcommittee is scheduled to put forth its Fiscal Year (FY) 2012 budget. It is expected that this bill will contain significantly less money for many programs and could affect the budgets for the National Institutes of Health (NIH) and Centers for Disease Control (CDC). Contact your Representative and tell them how critical NIH and the CDC research is for the pulmonary hypertension community.

NIH Funds New Stem Cell Projects
7/19/2011

(RT Magazine) - The National Institutes of Health (NIH) has provided $85 million over 5 years to nine new studies aimed at developing induced pluripotent stem (iPS) cells from patients with genetic variations that have been associated with pulmonary hypertension, coronary artery disease, clotting disorders, diabetes, and other conditions. The studies will build upon previous genome-wide association study (GWAS) findings and investigate how gene variants lead to the physical manifestations of these diseases. Read article

First PHA Telephone Support Group Meeting July 28
7/18/2011

Thursday, July 28, 8:00 p.m. ET

Have a hard time making it to a support group meeting? No problem. PHA is bringing the support group to YOU — straight to your home — via a telephone support group. The topic of the first meeting is "Getting to Know You."

Email Debbie@PHAssociation.org to participate.

Study: PH Patients at Increased Risk after Total Knee Arthroplasty
7/18/2011

7/15/2011 (Ortho SuperSite) - A study by researchers at the Hospital for Special Surgery has found patients who have a history of significant medical issues — especially congestive heart failure or pulmonary hypertension — are at increased risk for major complications following total knee arthroplasty. Read article

Health Care Reform Clears Path for Life-Saving Organ Transplant
7/14/2011

7/13/2011 (Insurance News Net) - You could say health care reform saved Milton Gilmer’s life. The Affordable Care Act was signed into law March 23, 2010, with the aim of extending medical coverage to more Americans. The law has been a political football, and arguments continue to rage over whether it’s good or bad for the country. This, however, is simply the story of how it affected one person. Read article

Graduate Student One Step Closer to Finding Cure for Cardiovascular Disease
7/12/2011

7/10/2011 (The Gateway) - A doctoral student at the University of Alberta has made a discovery that could lead to a cure for a disease which usually leaves approximately three years of life once diagnosed. Gopinath Sutendra has been researching pulmonary arterial hypertension, a disease characterized by excessive cancer-like growth of the cells in the pulmonary vessels of the heart, which provide blood to and from the lungs. These vessels end up getting blocked, resulting in right heart failure. Read article

Wednesday Webinar: Fight the Cause Online 2.0
7/11/2011

Wednesday, July 13, 3:30 p.m. ET, Webinar

Are you on Facebook? If so, this is the webinar for you! PHA staff and community members Colleen Brunetti and Lucia Martuccio will talk about how to use social networking sites to take action in support of PH research and education, as well as how you can go beyond Facebook to make a bigger impact and raise more funds using PHA's easy online tools.

Register now

Delayed Disease Recognition in One in Five Patients With PAH
7/11/2011

7/8/2011 (DoctorsLounge) - One in five patients report symptoms of pulmonary arterial hypertension for more than two years before the disease is diagnosed, with patients younger than 36 years being most likely to experience delayed recognition, according to a study published in the July issue of Chest. Read article

Join Kim Ford for Pulmonary Hypertension Awareness Day on July 8
7/5/2011

Kim FordPulmonary hypertension patient Kim Ford is taking her search for a cure with her everywhere she goes…and a lot of places she’s never been. From her Facebook account in Maryland, Kim’s organizing a nationwide PH Awareness Day on July 8. Participants will wear PH pins and clothing, distribute brochures, and raise awareness online.

Learn more

Risk of Blood Clot to Lungs From Sitting too Much: Study
7/5/2011

(Heartzine.com) - A study published in the British Medical Journal today has a finding which is relevant to a large percentage of the population; it describes an increase in the risk of developing pulmonary embolism for women who sit more than forty-one hours a week outside of work. Read article

Heart and Lung Transplant Recipient in Australia Hoping for a Breakthrough
7/5/2011

(inMyCommunity) - BORN with a hole between the two atria of his heart, and with the vital organ essentially operating back to front, Mike Lambe has always known he would one day need a heart transplant. He developed pulmonary arterial hypertension and received new lungs along with his heart just over six months ago. Read article

The Meaning of Events...
7/1/2011

The following is a copy of an entry from PHA President Rino Aldrighetti's blog: Empowered by hope - a PHA diary

The meaning of events...



The First Annual Power for PH PHun Walk for a Cure from PHAssociation on Vimeo.

Last month, Jill Glenn called to say she was going to The First Annual Power for PH PHun Walk in Edison, N.J.

Jill is president of Glenn and Glenn Productions - producers of our Kilimanjaro Climb (2nd video on linked page) and Lil Long videos - and a good friend and member of PHA.  Besides walking and raising funds for PH in her own community, Jill asked if we thought it would be ok if she and her team made a pro bono video of the event.

I know the quality of Jill's work and was excited. Glenn and Glenn are great listeners and their fiilms go beyond pretty shots to capture the meaning of what our community does.

So, the video is ready and here it is.  I know how I feel about it...Jill and Doug and their team have taken the story of one event and presented a picture of why people do what they do across our entire community. What do you think?

Global Partnerships...Greater Strength and Knowledge for us All
6/30/2011

The following is a copy of an entry from PHA President Rino Aldrighetti's blog: Empowered by hope - a PHA diary 

Global partnerships...greater strength and knowledge for us all

Several months ago, PHA announced the U.S. and international recipients of PHA's 2011 Tom Lantos Innovation in Community Service AwardsPH Israel was one of the awardees.  Here is a note from Dr. Yosef  Gotlieb to PHA's Senior vice president, Adrienne Dern, on the outcome of their project.

Dear Adrienne,

It is with pleasure that I am writing to let you know that the conference sponsored by the Israel Pulmonary Hypertension Association on Thursday, June 16th was a resounding success.

Nearly a hundred participants came to the meeting on "Pulmonary Hypertension: Profile of the Disease" to hear Israel's top experts lecture on the various aspects of PH: symptomatology, typology, diagnostics, therapies, and research horizons for treatment and diagnosis. The number of those in attendance was high despite a doctor's strike which required many senior physicians to substitute for younger doctors in the clinics and wards. Despite this, the auditorium was packed and we found ourselves having to add chairs throughout the first two sessions.

A panel on the complexity of care included a family physician, a mental health and support group worker, the director of a pulmonary rehabilitation unit at a children's hospital. a medical technology professional, and myself representing the patient's perspective. A vigorous dialogue ensued between pulmonary specialists and primary care physicians. The session ended with the promise of continuing exchange and engagement; as this was a major goal of the conference, we were very pleased to see this take place. We, the organizers and the participants who provided feedback, left the conference with the feeling that that the Israel PH community had been significantly expanded and strengthened by the conference and that there would be continuing impact on the target group we had sought to influence, namely, the primary care community.

Of those who attended the event, which was conducted in a decorous setting at a seafront Tel Aviv hotel, most were clinicians (physicians and nurses); a number of professors and heads of departments were also present. We have documented the meeting (some of the initial photos are attached) in stills and video and look forward to sharing our experience with other PH associations. We have already begun discussing possibilities for the next event to be held in what we hope will be a continuing series of meetings focused on professional and patient education.
On behalf of the Israel Pulmonary Hypertension Associationand myself, I want to reiterate how grateful we are to the sponsors of Tom Lantos Innovation in Community Service Awards and to Representative Lantos' family for enabling us to hold the event. Further, I wish to express again our gratitude to you and the Pulmonary Hypertension Association for facilitating our receipt of the funding necessary to implement this project.

We are much inspired and encouraged by the Pulmonary Hypertension Association. May you and the Association go from strength to strength.

Truly yours,

Yosef

Yosef Gotlieb, PhD

There's a lot more to read about the gvibrant and growing global PH community in the International section of PHA's website!

Viagra Keeps Newport Baby Alive
6/30/2011

6/29/2011 (South Wales Argus) - AT JUST five months old, little Cerys Small has survived three open heart operations and is being kept alive thanks to daily doses of Viagra. Read article

There's Still Time to Enter a Conference Theme Idea
6/28/2011

10th International PH Conference and Scientific Sessions
June 22-24, 2012 – Orlando, Fla. – Renaissance Orlando at SeaWorld
www.PHAssociation.org/Conference

Submit your theme idea by June 30!

As PHA plans to head back to Florida in 2012, we turn to you - the members of the PH community - to create an inspirational theme for this special 10th International PH Conference. This theme should convey the history of the organization and help us celebrate PHA and the progress of the PH community at our homecoming around the kitchen table.

The winner of the Conference theme contest will receive a complimentary registration to PHA's 10th International PH Conference and Scientific Sessions in Orlando, Fla. from June 22-24, 2012.

Learn more about the Conference the contest

Also, sign up for PHA’s Conference Alerts (will be prompted to sign in) – so you can stay informed on all the up-to-date information about the 10th International Conference and Scientific Sessions.

How to Submit a Theme Idea
Please submit Conference theme ideas to Conference@PHAssociation.org or PHA, Attn: Conference Theme Contest, 801 Roeder Road, Suite 1000, Silver Spring, MD 20910.

Deadline for submission is June 30, 2011 -- So send in your theme ideas TODAY!
Submissions will be reviewed and selected by PHA's Conference Committee.

United Therapeutics to Develop PH Treatment Based on Cells of a Placenta
6/21/2011

6/20/2011 (Business Journal) - United Therapeutics Corp. plans to develop a new treatment for pulmonary hypertension based on the cells of a placenta. Read article

Washington University Surgeons Successfully use Artificial Lung in Toddler
6/21/2011

6/18/2011 (eNews SPF) - Two-year-old Owen Stark came to St. Louis Children's Hospital in the summer of 2010 near death from heart failure and dangerously high blood pressure in his lungs. Washington University physicians and surgeons at St. Louis Children's Hospital knew they had to act fast to save his life. They collaborated to make several strategic and innovative decisions that led to the first successful use of an artificial lung in a toddler. Read article

Jim Gebhardt - PH Patient - Rides With a Purpose
6/15/2011

6/10/2011 (Leavenworth Times) - It could be the ride of Jim Gebhardt's life. Starting at 7 a.m. Friday, the Fort Leavenworth senior military analyst said he will be on a nine-day 4,015-mile trek through 11 states to the northeastern tip of California with three friends, all on motorcycles and all between the ages of 55 and 66, through all types of weather and altitudes. Read article

50 State Media Challenge: Get Coverage in 35 States by Sept. 1
6/13/2011

US MapSince the last 50 State Media Challenge update in April, PHers have received 14 news articles, bringing us to 36 articles in 23 states! We’re almost halfway to our goal of raising awareness in all 50 states and you can help us get the rest of the way there! » Join the challenge and read media success stories

Why Does Western Australia Lag Behind in Organ Donation?
6/10/2011

(Australian Broadcasting Corp.) - The Perth mother of two has a chronic lung condition and is one of about 1,700 people Australia-wide in need of an organ transplant. "During my second pregnancy three and a half years ago I became sick and developed pulmonary hypertension. As a result I need a double lung transplant and have been on oxygen 24 hours a day ever since." Read article

e-Learning Event: Lobby Locally - Fighting PH through District Visits
6/9/2011

Wednesday, June 15, 7:00 p.m. ET, Webinar
Congress’s August Recess is just around the corner. That means it is time to plan a face-to-face visit with your members of Congress at their local offices. Join Gavin Lindberg and Carl Hicks as they talk about the power of district visits. Register now

Right Ventricular Structure Differs by Patient Age, Sex, Race
6/7/2011

6/6/2011 (Internal Medicine News) - Right ventricular mass, volume, and ejection fraction differ significantly according to patient age, sex, and race, according to a prospective imaging study of more than 4,000 healthy people that was reported in Circulation on June 6. Read article

FREEDOM-M Trial of Oral Treprostinil in PAH Meets Primary Endpoint
6/6/2011

(The Sacramento Bee) - United Therapeutics Corporation announced today the completion of its FREEDOM-M Phase 3 trial of treprostinil diethanolamine (oral treprostinil), an investigational sustained release oral formulation of treprostinil, a stable synthetic form of prostacyclin, in patients with pulmonary arterial hypertension (PAH).  Preliminary analysis demonstrates that the trial has met its primary endpoint. Read article

Parents Make Public Appeal on Behalf of 5-week-old Daughter Who Needs Lung Transplant to Survive
6/6/2011

6/5/2011 (Business Wire) - Marc and Leslie Policastro of Camarillo, Calif. made a public appeal to the media Friday on behalf of their 5-week-old daughter, Katelyn, who is in immediate need of a lung transplant in order to survive. Read article

June is Scleroderma Awareness Month
6/2/2011

May 31, 2011 (PR Newswire) -  June is Scleroderma Awareness Month, and you can become an advocate for the Scleroderma Foundation by raising awareness and teaching others about this chronic, connective tissue disease. Read article

9-year-old Developed Pulmonary Hypertension After Living in High Country
5/31/2011

5/26/2011 (Summit Daily News) - Looking back, former Placer Valley resident Susie Ryan says there were plenty of signs hinting at her son Charlie Ryan's pulmonary hypertension. They just weren't very evident to everyone around him. Read article

Pulmonary Hypertension Bill Introduced in House of Representatives
5/20/2011

U.S. CapitolThe Tom Lantos Pulmonary Hypertension Research and Education Act of 2011 (H.R. 1810) was introduced in the House of Representatives last week by Reps. Kevin Brady (R-TX) and Lois Capps (D-CA)!

Learn more and take action

ATS: Heart Drugs Fail to Show Benefit in PAH
5/20/2011

5/19/2011 (MEDPAGE Today) - Two drugs that are beneficial in heart disease were ineffective in treating pulmonary arterial hypertension (PAH), a researcher said. In a randomized trial, neither aspirin nor simvastatin (Zocor) improved performance on the standard six-minute walk test, according to Steven Kawut, MD, of the University of Pennsylvania in Philadelphia, and colleagues. Read article

Registration still available for PHA on the Road!
5/19/2011

PHA On the RoadRegistration still available for PHA on the Road! 

PHA is heading back across the country in a few weeks with PHA on the Road: PH Patients and Families Education Forum – and there’s still time to register to attend!

June 4: Seattle, Wash.
June 11: Pittsburgh, Penn.
June 11: St. Louis, Mo.
June 18: Minneapolis, Minn.

http://www.PHAssociation.org/OnTheRoad

This FREE full-day patient and families education program provides attendees with PH education through interactive sessions which will cover topics such as diagnosis, long-term management as well as lifestyle issues. The program will also offer networking opportunities where attendees can interact with other patients and family members, as well as local medical professionals.

Participation in PHA on the Road is FREE, but space is limited and registration is required. Bring your friends, neighbors, coworkers – anyone who could benefit from some PH education! There is still space left, so register today.

Register by visiting http://www.PHAssociation.org/OnTheRoad or calling 301-565-3004 x768.

 

Dr. Ronald Oudiz Receives 2011 Award of Excellence in PAH Care
5/18/2011

Dr. Ronald OudizThe Pulmonary Hypertension Association is pleased to announce that Dr. Ronald Oudiz has been selected as the 2011 recipient of the PHA Award of Excellence in PAH Care. This prestigious award is given annually to a physician who has demonstrated clinical excellence in caring for patients with PAH, as well as exceptional support for the development of the PH community. Read more

PH Email Mentor Spotlight: Liz Brigham
5/18/2011

Liz BrighamAfter being diagnosed in 2004, Liz found perspective and hope from other pulmonary hypertension patients. Now she finds meaning in her own life by supporting others in the same boat.

Meet Liz | Learn more about PH Email Mentors

Twitter Helped Doctors Tell Patients Where to Get Meds After Japan Earthquake
5/13/2011

5/12/2011 (Scientific American) - In the hours after the magnitude 9.0 earthquake and massive tsunami hit Japan in March, essential infrastructure and communication were cut off, leaving many of the disasters' survivors without access to phones, electricity or water. And those who were on essential medications were on the cusp of losing their lifeline, too. Read article

Mother in Australia Seeks Answers for Daughter’s Death
5/13/2011

(The West Australian) - A grieving Spearwood mother wants an independent inquiry into the death of her daughter from a suspected blood clot two weeks after she was sent home from hospital after bungled care. She wants to raise awareness that even seemingly healthy young people can suffer pulmonary hypertension, a form of high blood pressure in the arteries of the lungs sometimes linked to blood clots. Read article

Four-Year-Old Boy "Shortest" in UK to Get New Lungs
5/13/2011

5/11/2011 (BBC News) - A four-year-old boy is the shortest person in the UK to have a successful lung transplant, doctors said. Surgeons at Great Ormond Street Hospital in London carried out the transplant involving Mason Lewis, measuring 93cm (3ft) tall. Mason, of Atherstone, Warwickshire, has suffered from pulmonary hypertension since birth. Read article

NY Fun Walk to Partner with Islanders Hockey Team
5/10/2011

NY Fun Walk participantsThe New York Fun Walk, a long-standing fundraiser benefiting the Pulmonary Hypertension Association’s (PHA’s) research fund, will have an exciting change of location for its 7th annual walk this fall.  The event will be held at the New York Islanders professional hockey team stadium, Nassau Coliseum, in Uniondale, N.Y.  The walk will take place in the coliseum’s expo area, and will be immediately followed by an Islanders game in which PHA will be the featured charity.  The date for this event has yet to be confirmed, but it will take place sometime this November.  Be on the lookout for an announcement on the final date later this summer!

For more information about this exciting venue, visit the Nassau Coliseum website.

Pfizer’s Revatio Receives European Approval to Treat PAH in Children
5/10/2011

5/9/2011 (InPharm) - The European Commission has given the green light to phosphodiesterase-5 inhibitor Revatio (sildenafil) for pediatric patients. Read article

High School Junior and Lung Transplant Recipient Pushes for Organ Donation Education
5/2/2011

4/30/2011 (Newsleader.com) - Maddie knew she had months, not years. When she was placed on the national organ transplant list because her lungs were failing, her doctors couldn't answer the big when — or if — question. Two months later she got the call. Her new organs were waiting for her at the Children's Hospital of Pittsburgh. Read article

Pulmonary Hypertension After a Lung Transplant Predicts RRT Need
5/2/2011

4/29/2011 (Renal & Urology News) - Pulmonary hypertension is a strong predictor of the need for renal replacement therapy (RRT) after lung transplantation, according to researchers. Read article

Healthcare Reform: Learn How It Has Impacted the Pulmonary Hypertension Community
4/27/2011

Healthcare Changes in 2011: How Healthcare Reform Will Affect the PH Community
Monday, May 2, 3:30 p.m. ET, webinar

In March 2010, the Affordable Care Act (ACA) was signed into law, drastically changing the healthcare industry in the United States. Although many of the changes will require up to 10 years to completely implement, the pulmonary hypertension community has already started to feel the effects of the new law.

Join Gavin Lindberg, PHA’s Washington Representative, as he explains what provisions are included in the ACA, how these changes have already affected the PH community, and what to expect over the upcoming months and years.

Register now

International Highlights: What’s Going on Around the World?
4/27/2011

4/19/2011 - Did you know that there are more than 50 PH associations operating worldwide? Just a few decades ago, the resources, support, and encouragement that these groups offer today just didn’t exist! Here’s a round-up of some highlights from our friends overseas, pointing yet again to the incredible energy of our global PH community! Read more

TAKE ACTION: Pulmonary Hypertension Call In Day Tomorrow!
4/25/2011

Take ActionJoin the PH community on April 26 for PHA’s National Call-In Day! Call your Members of Congress and urge them to do their part to cure PH by cosponsoring the Tom Lantos PH Research and Education Act of 2011. Call your legislators tomorrow, the 26th

Invitation for Physicians and Researchers to Attend ATS Event
4/25/2011

Actelion Pharmaceuticals US, Inc. and the ENTELLIGENCE Steering Committee invite physicians and researchers to the 2011 ENTELLIGENCE™ Young Investigators Award Ceremony to be held on May 17 during the upcoming American Thoracic Society (ATS) meeting in New Orleans. Learn more (PDF)

Children’s Organ Transplant Association Gives Hope and Makes Miracles
4/25/2011

4/21/11 (PNW Local News) - Giving hope, making miracles – the Children’s Organ Transplant Association (COTA) has been doing this for 25 years. In Auburn, a group of caring and committed people is working to give hope, and possibly make a miracle for 11-year-old Cullen Steele.  Cullen has pulmonary hypertension and needs a heart and double lung transplant. Read article

Pulmonary Arterial Dysfunction in Insulin Resistant Obese Zucker Rats
4/25/2011

4/22/11 (7th Space) - Insulin resistance and obesity are strongly associated with systemic cardiovascular diseases. Recent reports have also suggested a link between insulin resistance with pulmonary arterial hypertension. Read article

REVEAL Registry: PAH Exacerbated by Presyncope, Syncope
4/20/2011

4/18/2011 (Cardiology Today) - For patients with pulmonary arterial hypertension, a history of presyncope and syncope worsened the severity of disease, according to data from the REVEAL registry. What this indicates, according to researchers, is the importance of validating the prognosis and effect of syncope among patients with PAH as treatment guidelines continue to be defined. Read article

Study Supports the Safety of Transitioning PAH Patients from Inhaled Iloprost to Tyvaso
4/20/2011

(RT Magazine) - An open-label study demonstrated that the rapid transition from inhaled iloprost to Tyvaso® (treprostinil) was well tolerated and associated with maintenance of exercise capacity and improved quality of life in pulmonary arterial hypertension (PAH) patients. Read article

Judge Nancy McDonnell Knows the Importance of Organ Donation
4/20/2011

4/11/2011 (Cleveland.com) - Cuyahoga County Common Pleas Judge Nancy McDonnell's health began to fail in fall 1995. She was increasingly short of breath and went to her family doctor. Previous bouts with bronchitis were resolved with antibiotics. Different antibiotics were used, but a persistent cough would return. Then the doctor thought she might be suffering from asthma, and she was treated with inhalers and asthma medicine. After days of tests, she was diagnosed with primary pulmonary hypertension. Read article

April is National Donate Life Month
4/14/2011

Donate Life MonthMore than 110,000 Americans, including pulmonary hypertension patients, are waiting for organ transplants. Learn more and spread the word about the need for organ donors.

Join the Pulmonary Hypertension Insurance Mission!
4/11/2011

Working with insurance companies to get coverage for critical tests and pulmonary hypertension therapy can be an uphill battle, whether you are a PH patient or PH-treating medical professional. Fortunately, there are resources to help you advocate for PH therapy coverage.

Join Toni Heininger, Health Project Coordinator at University of Rochester, along with Margaret Beardsworth, PHA’s Insurance Program Manager, in a webinar highlighting common insurance problems and tips for confronting and educating insurance companies:

The PH Insurance Mission: Preparing for a Successful Insurance Campaign
Wednesday, April 13, 3:30 p.m. EST
Register now

Rev. White Comes to Washington
4/11/2011

Last week, PHA Board member Steve White came to Washington to help get the PH Research and Education Act introduced with a good number of original sponsors. Rev. White shares his story on PHA President Rino Aldrighetti's blog. If you'd like to learn what you can do to help advance our common cause through contacting your member of Congress (in your own community) or creating media awareness, contact Elisabeth Williams, PHA's Grass Roots Campaign Associate, at advocacy@PHAssociation.org. Read Rev. White's story

Dr. Larissa Shimoda to Discuss Mechanisms of Hypoxic Pulmonary Hypertension
4/11/2011

4/10/2011 (Eurekalert) - When muscles and organs are deprived of an adequate supply of oxygen the body's usual responses include increased circulation and a slight drop in blood pressure in the blood vessels serving the affected tissue. However, the blood vessels in the lungs react differently: blood pressure in the lungs rises, often with deleterious effects on the lungs' tissue and the heart. Larissa A. Shimoda, PhD, Associate Professor of Medicine at the Johns Hopkins University School of Medicine in Baltimore, Md., has dedicated her research to learning why this happens. Read article

New Clinical Trials Law to Benefit Rare Disease Communities
4/7/2011

Thanks to your calls and emails, and the advocacy of other rare disease groups, the Improving Access to Clinical Trials Act (IACT) went into effect on April 4. The IACT enables patients with rare diseases to enroll in compensated clinical trials without that compensation counting against their Social Security Income (SSI) or Medicaid eligibility income caps.

The IACT permits these SSI and Medicaid beneficiaries to accept up to $2,000 per year in compensation for participating in a clinical drug trial without losing their federal benefits. These changes allow more patients to participate in research trials that may someday lead to new treatment and eventually a cure for diseases such as PH.

Get the details about SSI benefits | Read more about the implications of the law

High School to Host 5K Fundraiser to Benefit Autism Speaks and PHA
4/7/2011

4/6/2011 (Neighbor Newspapers.com) - It started with a simple idea: a fundraiser with a big impact. The result was planning Dunwoody High School’s first 5K run to benefit Autism Speaks and the Pulmonary Hypertension Association. The cross country team chose PHA in memory of Eve Greenstein, parent of two cross country students, who died from the disease. Read article

Hard to Breathe
4/7/2011

4/5/2011 (Clarion Ledger) - It may be a short walk from her house to the mailbox, but it was a trek Sylvia Wallace, 57, of Jackson could not accomplish in the fall of 2008. She became so out of breath one night as she tried to walk to the restroom, her husband rushed her to Central Mississippi Medical Center emergency department. Read article

The Grape Escape 2011 in Missouri April 30
4/6/2011

Mark your calendars! On April 30, Bardenheier Wine Cellars of Richwoods, Mo., will host its annual fundraiser festival, The Grape Escape, featuring the amazing entertainment of the Home Grown Classics, playing from 5 - 9 p.m. Bring your family and friends for a fun picnic afternoon - including barbeque, raffles, a bake-off and complimentary wine/beer tasting.

For more information, map and directions, visit the Bardenheier Wine Cellars website. Proceeds will benefit PHA's Research Program and the St. Vincent DePaul Society.

Walk to Cure PH in Ohio April 9
3/29/2011

Walk 2 Cure PH logoOn April 9, the inaugural Walk 2 Cure PH: Ellie Godina Memorial Walk will take place in Euclid, Ohio, to raise community awareness about pulmonary hypertension (PH) and to support PH research.

Show your support today! Visit the Walk 2 Cure PH website to download a walker registration form.

Breathless, But Not From Asthma
3/29/2011

3/28/2011 (Washington Post) - The lung specialist fixed Kimberlee Ford with an unwavering gaze as he peppered her with questions that left no doubt about his skepticism: Was she looking for an excuse to miss work or school? Was she depressed? Did she use illegal drugs? Read article

GeNO LLC Initiates Study of Inhaled NITROSYL™ Nitric Oxide in Idiopathic Pulmonary Fibrosis and Pulmonary Arterial Hypertension
3/24/2011

3/23/2011(Medical News today) - GeNO LLC, a privately held, advanced development-stage technology company, announced commencement of the PHiano Study: A Phase 2, Dose-Escalation Trial for the Treatment of Pulmonary Hypertension in patients with Pulmonary Arterial Hypertension (PAH) and Pulmonary Hypertension secondary to Idiopathic Pulmonary Fibrosis (PH-IPF) using Inhaled NITROSYL™ nitric oxide (NO). The first patient was successfully dosed at Creighton University School of Medicine. Read article

Upcoming Webinars – New Hope for Diagnosis and Raising Awareness
3/23/2011

The following are two upcoming PHA Classroom live events.

PIM-1: A New Hope for the Diagnosis and Treatment of PH
Friday, March 25, 2:00 p.m. ET, Webinar

As research in pulmonary hypertension grows, we may find more ways to diagnosis, treat and ultimately cure the disease. Recently, Dr. Sebastien Bonnet of Laval University in Quebec, Canada, made the exciting discovery of the PIM-1 protein; a protein virtually unseen in normal patients, but seen in patients with pulmonary hypertension in amounts relative to the severity of the disease.

With positive implications both for early diagnosis and treatment, the discovery of PIM-1 provides more insight into the disease. In this webinar, Dr. Sebastien Bonnet will discuss his research and the relationship between PIM-1 and pulmonary hypertension.

REGISTER NOW

Media Matters: Working with the Media to Raise Awareness
Monday, March 28, 3:00 p.m. ET, Webinar

This is a unique opportunity to learn from experts at a communications firm.

The voice of the PH community is built on the personal stories of thousands of patients, caregivers, friends and medical professionals. Each of these stories is a powerful tool in raising awareness and working for a cure.

Join Jeff White and Hillarie Turner from Environics Communications and Elisabeth Williams from PHA for an encore performance to learn about using the media to your advantage when raising awareness in your community. This webinar is a great resource for both new and experienced media advocates. It will provide tips on pitching your story, what to do (and not do) in an interview, spotting media opportunities and more!

REGISTER NOW

CHMP Post-Authorisation Summary of Positive Opinion for Revatio
3/21/2011

LONDON, 3/17/2011(PharmaLive) -  On 17 March 2011 the Committee for Medicinal Products for Human Use (CHMP) adopted a positive opinion recommending a variation to the terms of the marketing authorisation for the medicinal product Revatio. The marketing authorisation holder for this medicinal product is Pfizer Ltd. Read article

PH Patient Partners With Popular Local Business to Benefit PHA
3/16/2011

On March 18 - 20, Posh Little Closet Consignment, a children's consignment sales business, will host its spring sale to help increase awareness about pulmonary hypertension and to raise funds for research, education and patient-serving programs.

Posh Little Closet is partnering with Amy Piazza, 31-year-old mother, wife and PH patient from Palm Coast, on her journey to create better public understanding of PH.

Throughout the event, Posh Little Closet will match $1 for every flat donation made to PHA. A concessions stand, bake sale, 50/50 raffle and educational materials will be available to shoppers throughout the weekend too!

Learn more about this unique opportunity! Follow Posh Little Closet on Facebook, and visit their spring fundraiser web page.

You can also read the event press release, and follow Amy’s PH journey on her blog.

Commentary by Charity Tillemann-Dick - Brother and I Grew 'Through' Medical Crisis
3/15/2011

3/14/11 (Naples Daily News) - "When I was diagnosed with idiopathic pulmonary hypertension, or PH, in 2004, it changed my family dynamic significantly. My personal medical drama demanded a great deal of unselfishness from our big family." Read article

PHA on the Road Again - Register Now!
3/10/2011

PHA on the RoadPHA on the Road: PH Patients and Families Education Forum

June 4: Seattle, Wash.
June 11: Pittsburgh, Penn.
June 11: St. Louis, Mo.
June 18: Minneapolis, Minn.
Visit PHA on the Road site

Get your maps ready because PHA is heading back across the country in June with PHA on the Road: PH Patients and Families Education Forum. PHA on the Road, a program of the Pulmonary Hypertension Association Medical Education Fund will be making stops in Seattle (June 4), Pittsburgh (June 11), St. Louis (June 11) and Minneapolis (June 18).

This FREE full-day patient and caregiver education program provides attendees with the unique opportunity to learn more about PH symptoms, diagnosis and treatment through interactive presentations, education sessions and exhibits. PHA on the Road also provides networking opportunities for attendees with others in their local regions. Attendees can interact with other patients and caregivers and meet local medical professionals in a casual non-clinic setting.

Participation in PHA on the Road is FREE, but space is limited and registration is required. Online registration is now open, so don’t relay – register today!

The Blue Lips Disease - We Set a World Record!
3/10/2011

blue lips

PHA's President, Rino Aldrighetti, recently posted a blog about the history of blue lips being a symbol of pulmonary hypertension, with periwinkle, the color some PH patient's lips turn when they are oxygen deprived, as the disease's color.

The blue lips symbol caught on big recently with the worldwide PH community stepping in to collect a record-breaking 54,949 blue kisses for the PHA United Kingdom's Pucker Up for PH Campaign. Congratulations to everyone who participated to help break the Guinness record!

Read more and watch a video from St. Louis on Rino's blog

Raynaud's Responds to Sildenafil
3/10/2011

3/9/2011 (MedPage Today) - Sildenafil (Viagra) may also help treat Raynaud's phenomenon. In a small randomized, double-blinded, and placebo-controlled trial, the drug led to a significant percentage reduction in the number of weekly attacks of Raynaud's phenomenon, according to Ariane Herrick, MD, of the University of Manchester in England, and colleagues. Read article

FDA Modifies Boxed Warning For Pulmonary Arterial Hypertension Drug Letairis
3/7/2011

3/4/2011 (PRNewswire) - The U.S. Food and Drug Administration today announced that monthly liver enzyme tests are no longer required for those taking Letairis tablets (ambrisentan), used to treat pulmonary arterial hypertension. Citing data from clinical trials and postmarket reports, the FDA said that the drug poses only a low risk of liver injury. Information related to potential serious liver injury and the need to monitor for such serious injury is being removed from the drug's boxed warning. Read article

‘Pulmonary Hypertension… A Breathtaking Disease’ European Awareness Campaign Launched on Rare Disease Day
3/3/2011

2/28/2011 (NEWS.GNOM.ES) - Events taking place on February 28 in Brussels and Vienna mark the launch of a new European campaign to raise awareness of pulmonary hypertension. Read article

Mother of Two Urges Awareness of Congenital Heart Defects
3/3/2011

2/28/2011 (The Niagara Gazette) - When Adrienne's daughter Olivia was born, she was informed that her baby had a heart murmur; despite her concerns, she was sent home. Then, “They took a look at some x-rays and I got a phone call from this doctor in Buffalo we had never met,” she said. “When a doctor tracks you down, you know that it can’t be good.” What the doctors had discovered was that Olivia had Truncus Arteriosus — a congenital heart defect that causes fluid to build up in the lungs and leads to pulmonary hypertension. Read article

e-Learning Event Today - Media Matters: Working with the Media to Raise Awareness
3/1/2011

The voice of the PH community is built on the personal stories of thousands of patients, caregivers, friends and medical professionals. Each of these stories is a powerful tool in raising awareness and working for a cure. 

In this webinar, join PHA’s Grassroots Campaigns Associate, Elisabeth Williams, and learn from Environics Communications about using the media to your advantage when raising awareness in your community. 

This webinar is a great resource for both new and experienced media advocates. It will provide tips on pitching your story, what to do (and not do) in an interview, spotting media opportunities and more!

Media Matters: Working with the Media to Raise Awareness
Tuesday, March 1, 3:00 p.m. ET, Webinar
REGISTER NOW
 

Findings Illuminate Role of Right Ventricular Failure in LV Free Wall Mass in Patients With CTEPH
2/23/2011

2/16/2011 (Cardiology Today) - Right ventricular failure in patients with chronic thromboembolic pulmonary hypertension was linked with a reversible reduction in left ventricular free wall mass, study data suggest. Read article

Device in Artery Helps Track Blood Pressure in Heart Patients
2/23/2011

2/10/2011 (The Columbus Dispatch) - As many as 2 million Americans with congestive heart failure could benefit from a pressure monitor inserted in the pulmonary artery to help doctors track early signs of trouble, according to a study published this week in the medical journal The Lancet. Read article

Tomorrow is PHA President Rino Aldrighetti’s Annual Update
2/22/2011

State of PHA – An Annual Update from PHA President Rino Aldrighetti
Wednesday, February 23, 2:00 p.m. ET, Webinar

The cause continues to move forward in many directions. 2010 was a year of continuing growth and strength in the fight against pulmonary hypertension. In this webinar, you will hear from PHA’s President, Rino Aldrighetti, on PHA's recent accomplishments and what we expect to achieve this year. Don’t miss it.

Register now

For Medical Professionals: Neonatal and Childhood Pulmonary Vascular Disease Conference in March
2/10/2011

PHA Building Medical Education Partnership with UCSF presents the 4th Annual International Neonatal and Childhood Pulmonary Vascular Disease Conference

For Medical Professionals:
4th Annual International Neonatal & Childhood Pulmonary Vascular Disease Conference
March 11-12, 2011
San Francisco, California

PHA is pleased to inform you about the 4th Annual International Neonatal & Childhood Pulmonary Vascular Disease Conference on behalf of the University of California, San Francisco (UCSF), a partner in PHA’s Building Medical Education in PH Program. International experts from around the world will meet to discuss the latest basic science and clinical science breakthroughs.

Half of the sessions will focus specifically on pulmonary hypertension, including information about established and emerging therapies. Conference sessions will highlight other PH specific issues such as cardiac catheterization beyond pulmonary vascular resistance as well as PH specific therapies: intravenous, inhaled and oral.

Physicians can earn a maximum of 16.25 AMA PRA Category 1 CME Credits at the conference.

View full programming information and register for the conference

Live in Arizona? Take Action for Transplants for PH Patients
2/7/2011

Tell Ariz. Governor to Reinstate Medicaid Funding for Transplants!

Ninety-eight beneficiaries who had been previously told they were approved for transplantation under Arizona Medicaid were removed from the waiting list because funding for the procedure had been cut from the budget in a money-saving measure.

Live in Arizona? You can help!
Tell your Arizona state legislators and Governor Brewer to ensure that Medicaid recipients in Arizona have access to the life-saving transplants they need. Use PHA’s talking points to craft your email

If you have received a transplant while receiving Medicaid in Arizona, or have another related story to share, please contact Katie at 301-565-3004 x749.

Rare Disease Day is February 28 - Get Involved
2/7/2011

Rare Disease Day and PHAFebruary 28 is Rare Disease Day! Educate others about pulmonary hypertension and connect to this international effort. Submit a photo or video, request a proclamation, write to your Members of Congress and more. Get involved in Rare Disease Day

Live in the D.C. area? On Rare Disease Day, enjoy a rare opportunity. Participate in a free day of events at the National Institutes of Health.

Longer Time to Treatment for Child IPAH Patients
2/7/2011

2/6/11 (MedPageToday) - According to a study of almost 3,000 patients at centers around the U.S., adults began treatment within two months of being diagnosed with IPAH -- compared with 11-months for the children, according to Robyn Barst, MD, of Columbia University, and colleagues. Read article

Society of Thoracic Surgeons: Lung Emboli Surgery Safer
2/7/2011

2/3/11 (MedPageToday) - Outcomes from pulmonary endarterectomy for the treatment of chronic thromboembolic pulmonary hypertension are improving, despite the number of increasingly complex cases, according to a large single-center study. Read article

Recording: Listen to PHA on NPR
2/4/2011

The Pulmonary Hypertension Association was on the Kojo Nnamdi Show, a local D.C.-area National Public Radio (NPR) program, on Wednesday, February 2. PHA staff member Debbie Castro, PH specialist Dr. Stephen Mathai from Johns Hopkins, and Dr. Gregory Kato of the National Heart, Lung, and Blood Institute (NHLBI) talked about pulmonary hypertension and PHA and answered listener questions. With 700,000 listeners, the show helped us raise awareness about the disease and PHA's work with the PH community. They dedicated the entire show to pulmonary hypertension, and it included a great question and comment portion from callers. 

"Understanding Pulmonary Hypertension" on the Kojo Nnamdi Show on NPR
go to 24:33 for the segment

Two e-Learning Events This Week: Annual PH Treatments Update and Organizing a Spring Special Event
1/31/2011

These two PHA Classroom live e-learning events are coming up this week, including our very popular annual update on PH treatments. Learn more and register today!

PH Treatments: What's on the Horizon
Tuesday, February 1, 3:30 p.m. ET, Webinar

It is an exciting time for PAH research. Over the past 13 years, eight PAH therapies have been approved by the FDA! In this session with Dr. Michael McGoon from the Mayo Clinic, learn about the new treatments available and treatments currently in the pipeline. 
Register now

Special Events 101: Planting the Seeds for a Successful Spring Fundraiser
Thursday, February 3, 3 p.m. ET, Webinar
Get tips and advice on planning a PHA fundraiser from some wonderful event planners! Sign up for our Feb. 3 webinar and panel discussion.
Register now

What Works for Raynaud's Phenomenon With Ischemic Finger
1/28/2011

1/26/11 (Internal Medicine News) - Until further testing confirms or disproves the promise of an oral formulation of treprostinil that is making its way through the developmental pipeline for management of Raynaud’s phenomenon and the ischemic finger, rheumatologists will have to continue to make do with modestly efficacious agents that all are best employed in conjunction with background therapy using a long-acting calcium channel blocker titrated to the maximum tolerated dose. Read article

U.S. Cardiovascular Disease Costs Will Triple by 2030, Study Says
1/26/2011

1/25/2011 (Los Angeles Times) - There's a new forecast of the cost to treat heart disease in the U.S. over the next 20 years -- and it isn't pretty. According to a study published Monday in Circulation: Journal of the American Heart Assn., the annual cost to treat heart disease -- including high blood pressure, coronary heart disease, heart failure, stroke and other conditions -- will triple by 2030, from $273 billion to $818 billion (in 2008 dollars). Read article | Read the AHA Study (PDF)

Long-Term Hypoxia in Flies Shown to Result in Permanent DNA Changes
1/26/2011

1/24/2011 (EurekAlert) - In an important study that may shed light on human ability to adapt to hypoxia, or inadequate levels of oxygen, researchers at the University of California, San Diego School of Medicine have proven that the genome of flies exposed to long-term hypoxia are changed to permanently affect gene expression. Their findings, to be published online by the journal of the Proceedings of the National Academy of Sciences (PNAS) the week of January 24, 2011, may lead to new targets for development of therapies for hypoxia-induced disease in humans. Read article

COPD in Acute MI Patients Spells Trouble
1/26/2011

1/24/2011 (Internal Medicine News) - Chronic obstructive pulmonary disease is a powerful risk factor for in-hospital mortality or cardiogenic shock in patients presenting with ST-elevation MI, according to a large retrospective study. The clinical inference is that the reduced cardiopulmonary reserve imposed by COPD – a disease often marked by pulmonary hypertension and right ventricular dysfunction – renders the circulatory system less capable of coping with the effects of an MI, Dr. Kohei Wakabayashi said at the annual scientific sessions of the American Heart Association. Read article

Two e-Learning Events This Week: The Empowered Patient and Starting a Support Group
1/24/2011

PHA Classroom, our interactive e-learning center for patients and family members, will be holding two live e-learning events this week. All you need is an Internet and a phone connection.

Tuesday, January 25
8:00 p.m. ET
How to Start a Support Group
Debbie Castro and Sophie Klein from PHA
Register now

Wednesday January 26
12:00 noon ET

The Empowered Patient: Nurturing Partnerships with your Medical Professionals to Get the Best Care Possible
Deborah Levine, MD, University of Texas Health Science Center at San Antonio
Register now

For Medical Professionals: Free CME/CEU Live Webinar Thursday on PH in Systemic Sclerosis
1/24/2011

PH in Systemic Sclerosis
January 27, 6-7 p.m. ET
Virginia Steen, MD

This live PHA Online University webinar will feature Dr. Virginia Steen, a Professor of Medicine at Georgetown University and a member of the PHA Scientific Leadership Council. Dr. Steen will present on Pulmonary Hypertension in Systemic Sclerosis. Those attending this presentation will be eligible for CME/CEU credits with the completion of a post test and evaluation.

Medical professionals: Register now

Patient Voices: Rare Diseases - Listen to Diane Ramirez Speak About PH
1/24/2011

(The New York Times) - Living with any disease can be a trial, but patients with rare conditions face a host of uniquely difficult challenges. Simply getting an accurate diagnosis can be an enormous task, and many with poorly understood illnesses struggle with isolation and loneliness. Here six men and women talk about how their lives have been most affected by rare conditions. Listen to Diane Ramirez speak about PH. Read article and listen to recordings

Being a Caregiver From Afar Can Pose Challenges
1/24/2011

(TCPALM) - Despite crippling arthritis, pulmonary hypertension and the autoimmune disorder lupus, what my 82-year-old oxygen-dependent mother says she wants most is to live with her two 10-year-old Himalayan cats and die in her own house. But figuring this out isn't easy, particularly long distance. Read article

A Good Book Helps Parents Bond With Newborns in NICU
1/18/2011

1/11/11 (parentdish.com) - "Alyssia was in an incubator in the middle of the room, with tubes and all sorts of things going on around her," Mélissa Asselin, mother to the now 5-year-old who was born with pulmonary hypertension, tells Healthland. "Reading gave us a way to stay close. I couldn't talk to her or touch her, but she heard the sound of my voice. That simple activity helped me get through the situation, and I have beautiful memories of the experience." Read article

PH Medication on its Way for Boy in Australia
1/18/2011

1/14/11 (Fraser Coast Chrinicle) - Julian Summers has defied the odds for seven years but when flood waters separated him from life-saving medication his family faced their toughest challenge yet. Read article

5 Upcoming PHA Webinars, Including a PH Treatments Update
1/11/2011

PHA has five webinars coming up in the next month on the PHA Classroom schedule, including an update on PH treatments and how to get the best care possible from your medical professionals. Check them out and register today!

Newly Diagnosed? What You Need to Know
Wednesday, January 19, 1:00 p.m. ET, Webinar

If you or someone you know was recently diagnosed with pulmonary hypertension, this free webinar is for you. Louise Durst, RN, has been working with pulmonary hypertension patients for nearly two decades. During this call, she reviews the basics of what every pulmonary hypertension patient should know about PH, treatment and coping with this disease.

Register now

How to Start a Support Group
Tuesday, January 25, 8:00 p.m. ET, Webinar

Want to meet another pulmonary hypertension patient in your town or region? Not sure where to start looking? PHA can help you find other patients and bring them together to start a dialogue of support and education. At its simplest, a support group can be defined as two or more people. We're sure we can help you find at least another patient, if not more, to meet face to face for support.

Register now

The Empowered Patient: Nurturing Partnerships with your Medical Professionals to Get the Best Care Possible
Wednesday, January 26, 12:00 p.m. ET, Webinar

Learn how to get the most out of time-limited medical appointments. Deborah Levine, MD, will discuss strategies for communicating effectively with medical professionals, and methods for opening the channels of communication between your primary care provider, PH team and other specialists.

Register now

PH Treatments: What's on the Horizon
Tuesday, February 1, 3:30 p.m. ET, Webinar

It is an exciting time for PAH research. Over the past 13 years, eight PAH therapies have been approved by the FDA! In this session with Dr. Michael McGoon, learn about the new treatments available and treatments currently in the pipeline.

Register now

Special Events 101: Planting the Seeds for a Successful Spring Fundraiser
Thursday, February 3, 3:00 p.m. ET, Webinar

Planning to organize a fundraiser, but need some additional information and advice? This is the perfect opportunity to find out what it takes to plan a special event and get your questions answered! This presentation will provide an overview of "Event Planning 101" and will feature seasoned special event planners who will speak from their experiences.

Register now

New Diagnostic Tool To Detect Complications In Lung Transplant Patients
1/11/2011

1/2/11 (Medindia) - University of Michigan researchers have developed a new diagnostic tool that could help predict a fatal complication in lung transplantation patients. In the complication known as bronchiolitis obliterans syndrome (BOS), scar tissue builds up in the lungs and chokes off the ability to breathe. Read article

What Pulmonary Hypertension is -- And Why You Should Know
1/10/2011

1/5/11 (LancasterEagleGazette) - Many patients with diseases such as sleep apnea, lupus or rheumatoid arthritis are at risk for pulmonary hypertension. This disease might also affect people with liver disease, blood clots in their lungs, HIV and other lung ailments. PH is different from what most people think of when they hear "hypertension." Read article

EU Agency to Review Other PAH Drugs
12/23/2010

12/16/10 (the heart.org) - The European Medicines Agency is to review the hepatotoxic profile of two other endothelin receptor antagonists (ERAs) for the treatment of pulmonary arterial hypertension following the withdrawal last week of Pfizer's ERA sitaxentan (Thelin) due to two cases of fatal liver injury linked to the drug. Read article

Happy Holidays and Thank You
12/22/2010

detail from PHA's Holiday CardHappy Holidays from the Pulmonary Hypertension Association. All of us at PHA wish you and yours a holiday season and new year filled with many good things. We are honored to be in the fight against PH with you.

View our holiday card

New Email Group Launches for PHA Special Events Community
12/22/2010

Balloon Release at PHA Special EventThis week, PHA’s Special Events program launched an email group called the Special Events Forum. Anyone interested in or currently planning a PHA special event fundraiser is encouraged to join! Use the Forum to share and receive fundraising tips, advice and encouragement.

Join PHA’s Special Events Forum (requires a free Google account)

Pfizer Stops Clinical Trials Of Thelin® And Initiates Voluntary Product Withdrawal
12/10/2010

(Bloomberg) - Pfizer Inc. is recalling its lung drug Thelin worldwide and halting trials of the medicine after it was linked to potentially life-threatening liver damage. No new patients should be prescribed Thelin and those receiving it should be transferred to other therapies, Pfizer, based in New York, said in a statement today. Read article

What Could You Do with $5,000?
12/7/2010

huff and puff posterPHA wants to help you receive a grant of up to $5,000 to help raise awareness of pulmonary hypertension or develop or expand services for patients. Applications for a Tom Lantos Innovation in Community Service Awards are being accepted until Jan. 3, 2011.

More information is available online,