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Patient story

Barbara SmithBarbara Smith

I have been a PHA member since 1996, and was diagnosed with PPH in 1995. I am on Flolan treatment for management of my disease since early 1996, when I found Dr. Stuart Rich in Chicago, who was specializing in Flolan for PPH, through my primary care physician. Prior to my diagnosis, I lost my sister, Rachel, age 46 to the disease. She was suffering with symptoms from late 1993, when her doctors were treating her for respiratory viruses. She was finally diagnosed in June, 1994, and passed away in September, 1994. My daughter, Angela, age 29, passed away in October, 1994, just two months after my sister, while carrying her third child. Her symptoms came on suddenly at the beginning of August, 1994, but her symptoms were ignored because they were thought to be pregnancy related, until just less than a week before her death. At the time she was diagnosed, doctors were of the belief that this disease was not familial, and were not aware of available treatments, thus delaying treatment during its earliest stages.

When I joined PHA, I had little hope that I would survive. I was 55 years old, and had watched two of the most important people in my life, who were younger and stronger, succumb. When I attended my first PHA conference in Atlanta, my outlook changed dramatically. I saw many, many people who were managing their illness bravely and learned that the outlook for me was not as grim as I thought. I met some of the bravest, most compassionate and energetic people I’ve ever known, who were not only managing their disease, but LIVING with it. It’s been four years since I began treatment, and I am grateful for every day that I can do my part in helping people who are going through all of the emotions that I have been through. At the last PHA conference in Dallas, we met many members who were affected by the diet drug Phen-Fen, and it became our effort to have that removed from the market.

 

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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.