When Gwendolyn Brown, Alex Flipse and Diane Ramirez were diagnosed with pulmonary hypertension (PH) in the 1980s and 1990s, little was known about the disease. Life expectancy was all too short, with limited treatment options. Specialized care didn’t exist. They were scared, depressed, exhausted. But as research and treatment evolved, they found strength, resilience and their voices. They also found a community of other people affected by PH, connected by a new organization, the Pulmonary Hypertension Association. In this month’s cover story, they recall their challenges, triumphs and hopes for the future.
Gwendolyn R. Brown Cleveland, Ohio
I have lived with pulmonary arterial hypertension (PAH) for more than 40 years. I have survived a heart attack, three strokes and 11 mini strokes. Today I lead PHA’s Cleveland Community Support Group and am a minister at Zion Pentecostal Church of Christ. When I first showed signs of PH, I was misdiagnosed and treated for asthma for three years. I got worse, passed out, and my body started swelling up. I couldn’t go up a flight of stairs or do any activities around the house.
1987: Dorothy Olson, Teresa Knazik, Shirley Brown and Pat Paton connect with a goal to help PH patients.
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PATHLIGHT // ISSUE 4
1990: First issue of Pathlight published.
On July 10, 1982, I had a heart attack. I was 25 with a 4-year-old daughter. After a lung biopsy, I was diagnosed with primary pulmonary hypertension (PPH). The doctor told me that I had PH, a very rare disease that had no cure. He said I should go home and get my life in order because I would not live to see 28 years old. Living with PH in 1982 was very challenging. I didn’t understand why I had this disease. The only treatments available were channel blockers, blood thinners and water pills. I did what my doctors asked of me. They told me to lose weight, and I did. New drug New drug By 1998, my illness took a toll on me. I was on daily oxygen, and my daughter Kennie had become my caregiver. I felt like there was nothing else my doctors could do. Then I got a call from Victor Tapson, M.D., at
1991: Dorothy, Teresa, Pat and Judy Simpson meet in Florida to organize United Patients Association for Pulmonary Hypertension (kitchen table meeting).
