OUR JOURNEYS

Patient story

Earl Selvage

All three PHA Conferences I have attended have been fun and informative in their own way. My first conference in Atlanta (1994) was helpful so that I didn’t feel so isolated having such a rare illness and having just become hooked on Flolan in its trial stage. Seeing all those people with Flolan pumps strapped to them really made me feel like I was with family. I learned so much about PH and made many new friends.

For my second Conference in Dallas (1998) I took my three children and made it a family trip. I met many people with PAH whom I had previously befriended online, and we had an awesome time together.

My third conference was in Los Angeles (2002). I had been on Flolan for nine years and the drug did the trick for me. It had repaired the damage to my pulmonary arteries and I was two months away from having the pump removed. I was full of energy and having the time of my life at the conference.

PHA Conferences are definitely the place to be for PAH patients. Lots of doctors, nurses, and caregivers are there alongside us ready and willing to chat about anything and everything. Pharmaceutical company representatives are also there and are very friendly and have lots of free stuff. I love the free stuff. This is a PAH patient’s opportunity to learn all they can about this illness from diagnosis to everyday living. It truly is an amazing three days.

 

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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.