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Patient story

Julie Smith

I was first diagnosed with PAH in January 2005. It was hard to accept and hard to face. My husband still can't accept it, makes fun of me, and my condition. I think that is because he is scared. I have been trying to learn as much about it as possible. But it is still so confusing. There are so many forms of PH. I still am confused. I have to travel over an hour to 2 hours to get to see my doctor, who by the way, is fantastic, Shelly Shapiro. This disease is so new, I can't find any support groups in the town that I live. How can I expect my family to understand it if I can't?

There is no one to talk to. I feel very alone. Sometimes, I over do it because I want to be normal.

I am currently on Tracleer, take lacents to reduce the fluid in my body, and digetek for my heart. I have to take potassium supplements and blood thinners.

Some days I feel like I can't get out of bed. I am now also taking a form of Viagra and just completed a 16 week clinical study and will now continue for another 52 weeks. I feel it is important to contribute the the cure of the disease.

I just wanted to talk to someone or just get my frustration out. It is hard to understand this and even harder to go through it alone.

UPDATE: July 11, 2007

Hi, I wrote several months ago about having PAH.

I am 53 years old, I am currently taking Tracleer, Tadanfil, digitek, lisex, digitek, potassium pills, Diavan, warafan, and lipitor.

The frustration with this disease is that nobody knows anything about it. The public is completely unaware of this condition. It makes it hard, because I look healthy, but physically I am disabled.

People misunderstand the use of hypertension in the disease and think it is high blood pressure. It is hard to watch your life go by.

I am trying to stay strong, I am in a clinical study with great women, I want to live.

I just wish there were more people where I live to talk to about it.

Thank you

 

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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.