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Newly Diagnosed Advisory Board

PHA Advisory Boards

The Newly Diagnosed Advisory Board helps PHA to strategize, plan and gather feedback on issues related to newly (within 3 years of diagnosis) diagnosed adults with PH. The Advisory Board makes recommendations to PHA about new and existing education, services and programming to meet the needs of new patients and their families. The Advisory Board meets quarterly.

Submit a question or comment to the Newly Diagnosed Advisory Board

Newly Diagnosed Advisory Board Job Description (PDF)

Brenda M

Brenda M

My name is Brenda MCowan. I am a retired teacher and administrator. I was diagnosed with IPAH in October, 2011. I live in Cape Girardeau, Missouri, and am active in the St. Louis Support Group.

 

Hermalinda A

 

Jody H

Debbie V

Debbie V

I was officially diagnosed in May, 2015, after years of struggling to get the diagnosis confirmed. My desire is to help and encourage others who are going through this process. PHA has been a great support. The 2016 PHA conference was life changing. I want to help develop PHA's efforts in this area for the newly diagnosed.

Charlotte M

Charlotte M

I was diagnosed with Primary PH in the spring of 2005 while living a 7000 ft. in Flagstaff, AZ. Lost my job. friends, church and life over night as I had to "get off that mountain NOW".  After 4 months of diagnostic test in Phoenix we returned to the Puget Sound.  I've been active with PHA since 2006 and became a support group leader since 2008.  I have worked with our local PH doctors and have had most of the first "support" contact with their newly diagnosed patients because I, myself, am a retired Nurse Practitioner.  I have also been included in Educational offerings in these PH doctors' offices to teach their staff what are PH patients' most pressing concerns and fears.

Beth B

Beth B

Patient

I was diagnosed with PAH as the result of a congenital heart defect (atrioventricular septal defect) shortly after having my son. I had symptoms growing up that were attributed to asthma, so I was surprised to learn that I really had PAH. I have been on meds for a couple of years and I'm doing pretty well.

Elisa L

Elisa L

Patient

I am a Fashion Designer and a Life Coach, and in my spare time I Phight my ph and Lupus.

Kevin P

Kevin P

Patient

When I found out about the PHA, I had to become involved. People need support and the public needs to know about PH.

Nichole B

Nichole B

Patient

I was diagnosed 11-12-13, three days after saying "I do" to my husband. Our newlywed stage has been much different from other newlyweds, thanks to PAH. My husband has become more than just that, he is my caregiver and biggest support as well!

I always try to find the positive in everything; and have realized that my life doesn't have to stop, it just has to be adjusted for me to continue to live and thrive in my daily life! I still have my ups and downs - but, PHA has provided me with the opportunity to focus on bigger things; like this committee and being a Support Group Leader.

PAH may have changed my life story, it may have taken me on a different path but, if my story can help just one person, then everyday of this is totally worth it!

Sucheta K

Sucheta K

Patient

Like most PH patients I too was misdiagnosed with asthma before I started getting dizzy. After an RHC and DNA profiling it turned out to be idiopathic PAH. I work a full-time desk job and take dance classes. I am a loving wife and a fun mom of two kids.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.