OUR JOURNEYS

Patient story

Barbara Thompson

"My husband took me to 14 different doctors before one of them had the sense to run an echocardiogram. I had been bedridden for almost 2 years."

The last wedding I remember directing - or remembering anything else, as far as that goes - was in April of 2000. My husband took me to 14 different doctors before one of them had the sense to run an echocardiogram. I had been bedridden for almost 2 years. Ya know, when your brain is not getting the oxygen it needs, you can't remember things. Chuck told me some time later that that when the primary care physician called to give us a prognosis, he said that if I wanted to be present at our daughter's wedding I should start medication immediately, but at most, I'd only be around for six to nine months.

Barbara Thompson

I am so thankful my family didn't give up on me & that I'm still kickin' after almost ten years. Yep, it's just a "God-thing." No family should have to go through what my family suffered through for so long. Awareness is the KEY to finding a cure. My heart aches every time I hear of another of my PHriends passing. I am blessed to be here.

"By the way, not only do I have this "rare" disease but my mother-in-law died from it and probably my sister-in-law at the ripe ol' age of 35. Rare?? Really? More like misdiagnosed. Come on medical community—learn about pulmonary hypertension and how to treat it."

By the way, not only do I have this "rare" disease but my mother-in-law died from it and probably my sister-in-law at the ripe ol' age of 35. Rare?? Really? More like misdiagnosed. Come on medical community—learn about pulmonary hypertension and how to treat it.

 

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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.