OUR JOURNEYS

Patient story

Sharren YamronSharren Yamron

I was diagnosed with PPH in April of 1993. Being in real estate I noticed running up and down stairs was becoming a problem for me. My doctor was thorough and after all the tests I was on to the transplant list.

I was going downhill quickly and willing to do anything to tackle this disease. When they offered me an experimental drug, I said put it to work ASAP. Then Flolan was still in trials but soon to be approved. I felt the best way to protect myself was with as much knowledge as I could find about PPH.

I was so happy to find the group of PHA ( then UPAPH) and sought them out. I talked to other patients and felt inspired when we talked. There were three of us who started talking and decided to start the support group here in Pittsburgh. Its been up and running for some 6 years now. Although the original members, the two other girls watch from above now. I miss them. I was on flolan for two years and it certainly made me feel normal again.

The time came for me to be transplanted in 1995. I was in jeopardy due to some surgery and needed to be transplanted soon. Being in ICU for two weeks and once I got better to go home it was a few weeks later I was transplanted. The transplant was complicated for me and it brought about a great many problems. I was able to go to a conference for leadership with PHA in 1996.

Even though I have been transplanted, I still chair the meeting here and only recently missed two meetings due to my health. I am waiting for that to change soon. There is always hope where there is a breath left in you. There are others that help in supporting the group and who are the future of the meetings. This is something I am happy to see. Others who know the importance of giving of themselves and to extend a hand. Thanks to all who help and all who care so much. They are the ones who are truly courageous. You never have to feel alone with this diseases, others have walked before you and will continue walking with you. Keep looking forward.

 

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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.