Our Journeys

Patient story

"This illness was a death sentence to my mother. I’ll not let it be a death sentence to me."

- Danya Edwards

Danya Edwards

My name is Danya Edwards. I have pulmonary arterial hypertension and Osler-Weber-Rendu syndrome. I lost my mother to this horrific disease when I was 26 years old. My mother was often tired, retained a lot of water in her body and had shortness of breath. She kept going to several doctors over a few years but could not get a right diagnosis. She was eventually diagnosed with pulmonary arterial hypertension. The illness was so advanced that the doctors said it was irreversible. The only option given was a heart and lung transplant, but she was too sick to be even considered.

On August 12, 1994 my mother died at Maimonides Medical Center in New York City, NY. She was only 48 years old. Yes, 1994 was the toughest year of my life. At age 37, I found myself with symptoms that include shortness of breath, dizziness, and fatigue. I was referred by a lung doctor to Columbia Presbyterian Hospital for follow-up after a right heart catherization was done. I was told I had pulmonary arterial hypertension. I was afraid and thought I was going to die after searching through the web. My mother was the only person I knew had this condition. I pray to God that my children do not inherit this progressive disease.

The staff at Columbia Presbyterian has been able to prescribe several medications and tests. They also have calmed some of my fears; I have good and really bad days. The Pulmonary Hypertension Association has been a great tool for information and other patients let me know that I am not by myself. This illness was a death sentence to my mother. I’ll not let it be a death sentence to me. I want to be there for my family. Thank you for the support you provide.

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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.