I’m Aware That I’m Rare: Gwendolyn R. Brown (225)

The phaware® interview

40 year long-term pulmonary hypertension survivor Gwendolyn R. Brown discusses the importance of clinical trials, building a great PH care team, and how THE LION KING is a perfect metaphor for PH.

My name is Gwendolyn R. Brown, and I am a 40 year survivor with pulmonary hypertension.

When I was diagnosed at that time, there was nothing out there. For three years prior, I was getting sick, I thought it was a cold. And I kept going to the doctor, and then they diagnosed me with asthma. The asthma medication wasn’t working, and it started getting worse and worse. I started passing out. And my last time I passed out, I remember waking up in the ICU and there was this one doctor there. And he was like, “I think you have this disease. It’s a rare disease, but I need to find out.” Back then, they didn’t do right heart catheterization, they did lung biopsies.

So, I had to have a lung biopsy done, and when he came back, he said, “You have pulmonary hypertension.” He said, “It’s a very rare lung disease.” He…