BUILDING AN EFFECTIVE PH ASSOCIATION: STORIES FROM THOSE WHO HAVE BEEN THERE

PHA Austria

A Family’s Victory, a Nation’s Hope: The Story of PHA Austria

Immediately after my daughter Maleen was born, she suffered from a very serious case of pneumonia. My wife and I went to several physicians and, instead of helping us, they demanded patience from us. After a long, drawn-out period of uncertainty, Maleen was finally diagnosed as suffering from idiopathic pulmonary arterial hypertension at the age of three years. At that time there was still no treatment for children available in Austria and we were sent home with the words:

“Sorry, we cannot do anything about it. Your daughter will not live past five years old. Unfortunately, there is no therapy or cure for pulmonary hypertension for children.” Read more

PHA China

From the Laboratory to the Villages: The Story of PHA China

It is estimated that there are 2,500 to 5,000 new IPAH patients in China each year. For other forms of PH, the numbers are most likely even higher. Most patients are misdiagnosed initially and simply wait for the end, because they cannot afford the expensive medication. PHA China is working to change that reality. Read more

PHA Israel

Building Bridges to Fight PH: The Story of PH Israel

It is said that “Necessity is the mother of invention.” I guess it’s the mother of associations as well. When I was diagnosed with pulmonary hypertension in July 1999, I was overwhelmed by fear, confusion, loneliness and a sense of betrayal by my body. But when I asked myself what were my needs, I realized my most urgent need was for companionship, for someone who had “been there” and who could understand me, someone who would listen to all my questions and try to answer them, someone who wouldn’t be afraid of my tears and wouldn’t judge my jokes. …So I founded PH Israel. Read more

PHA Japan

Growing Up and Getting Louder: The Story of PHA Japan

In March 1996, my daughter, aged 14, was diagnosed with IPAH. Every doctor we talked to in Japan said there was no way to cure her and that she only had six months to live. We were shocked and desperate. Thankfully, we were lucky to have a family member who was a doctor working in the U.S. She told us about Dr. Robyn Barst and Flolan therapy. We took our daughter to New York right away and she started treatment there. She got a lot better and went back to school as soon as she returned to Japan. This is how my daughter became the first Flolan patient in Japan. At the time, no one in Japan — not even the doctors — knew of this therapy. We went to see many doctors to try to convince them how good this therapy was and to show them how it had helped us. Read more

 

HAP Mexico

If we walk together, we will be able to overcome obstacles to obtain our goals and dreams. Being ill does not mean that we have to lie in bed. Being ill is a reason to move ahead. My name is Cecilia Martínez Ramírez. I am a registered nurse and PAH patient. I started having health problems when I was 15 years old. At the time I was a student and I was very active. I practiced athletics and rhythmic gymnastics. All of a sudden I started fainting, had constant respiratory problems, nose bleeds, headaches, dizziness, accelerated heartbeat and chest pain. I saw many specialists and they all gave a wide range of opinions. Because of this, I lived for two years going from one doctor to another, from one health institution to another. I tried everything including alternative medicine and spirituality centers. Read more 

PHA Norway

Few People and Few PH Patients: The Story of PHA Norway

Norway’s population is a little more than 4.5 million citizens. To put this in perspective, this is about half the population of New York City! Pulmonary hypertension is a rare disease and with such a low population this means that the number of PH patients in Norway is very low. In fact, there are only twelve patients [as of spring, 2009] who use IV-medicine or take medicine administered subcutaneously. All in all, the estimated Norwegian PH population is less than 100. This makes PHA Norway a very useful tool for PH patients to locate each other, exchange experiences and make them aware that even though the disease is rare, there are other people in the country in the same situation as themselves. Read more

PHA South  Africa

Connecting Patients and Doctors: The Story of PH South Africa

"It is with a heavy heart that PHA reports the passing of Sharon Chetty on May 29, 2008. Her story is one that continues to inspire many around the world to keep fighting no matter what the odds, because one person can make a difference." –Ed.

When I was diagnosed with what was then called primary pulmonary hypertension (PPH) in October 2001, I was shocked at the rareness of this condition. At first, when I was introduced to a PH patient who seemed to be doing well, I was hopeful. However, I became very depressed after he passed away just a year after we met, barely five years after his diagnosis. After learning about PHA and its services through my youngest sister, I was amazed at the number of PH patients and support groups around the world and the intense work that was going on. This was the start of my own recovery. Read more

PHA US

From an Acorn, a Tree Grows: The Story of PHA (US)

In 1990, when PH patient Pat Paton and her sister, Judy Simpson, began searching for other pulmonary hypertension patients in the United States, the National Organization for Rare Diseases (NORD) had identified only 187 nationwide. PH was considered an exceedingly rare disease then, and few general practitioners or even specialists were familiar with it. There were no approved drugs for PH at that time, only palliative treatments to ease patients’ suffering. For half of them, a pulmonary hypertension diagnosis meant less than three years to live. Read more 
 

FUNDAVHIP Venezuela

The Venezuelan Foundation for Pulmonary Hypertension (FUNDAVHIP) was created as a response to the insignificant amount of information in Venezuela regarding PH. From there, a group of patients and a dedicated physician began the arduous task of making the disease known and getting other doctors interested in caring for PH patients. … Before FUNDAVHIP there was only one doctor in the entire country who saw PH patients: Dr. Douglas Olivares. … I was taking only Sildenafil, and for a while I was fine with just this medication. However, my disease started to progress and Dr. Olivares prescribed Bostentan. But there was no information or any government coverage for such an expensive medication. As a result, we decided there was a need to create a PH foundation in Venezuela because so many others were facing the same problems. Read more


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NORD

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.