‘After living with this illness for over 33 years, I learned that my voice counts, what I go through matters, and what I do makes a difference.’

Diane Ramirez was diagnosed with pulmonary arterial hypertension (PAH) in 1987. At the time, it was known as primary pulmonary hypertension, and there were fewer than 200 known cases. Today, Diane lives in Lexington, North Carolina.

 Diane originally shared her pulmonary hypertension journey in Pathlight, PHA’s member magazine. The December 2020 issue launched the Pulmonary Hypertension Association (PHA)’s 30th anniversary with stories of the association’s early years, the journeys of long-time survivors and advances in pulmonary hypertension (PH) research. Read on for more of Diane’s story.

By Diane Ramirez

Receiving a PAH diagnosis at 24 years old was extremely challenging. My work, school and social life had to change. There were no treatments for PH. I was put on oxygen to help with shortness of breath, heart medicine and a blood thinner as a precaution. I was terrified, and I barely understood what was happening.

So much has changed since then. Today I have a better understanding of PH and what it entails. I am happy and grateful to be alive. I didn’t have much gratitude or happiness when I was diagnosed. I felt alone and scared most of the time.

I connected with other patients online in 2001. Later that year I had my first appointment with a PH specialist. Today, I take three medications approved by the FDA to treat PH. I receive treatment at Duke University Medical Center, a PHA-accredited PH Care Center.

I wanted and needed support with this illness when I was diagnosed. I found out about PH before PHA and support groups existed. Today I am a support group leader for PHA’s Piedmont Area North Carolina group, and I try to help patients as much as I can. I have participated in clinical trials to help with research.

Finding my voice

At PHA’s 2008 International PH Conference and Scientific Sessions in Houston, I learned about advocating for myself. A couple of people helped me understand the importance of my voice. Later that summer, I set up my first meeting with a member of Congress. There were five patients in that meeting, and we all felt heard. It was incredible.

I have advocated on behalf of PHA for PH awareness, research and education for 12 years, and I have no intention of stopping. Meeting members of Congress locally and in Washington, D.C., and speaking up for myself and others is part of what keeps me alive today.

I served on the PHA Board of Trustees for 10 years. My hope is that I can be an example to other PH patients to use their voices and be heard.

After living with this illness for over 33 years, I learned that my voice counts, what I go through matters, and what I do makes a difference. I learned to enjoy all the moments life has to offer: to laugh, dance when I can, call a friend and be a friend.

PH has taught me how to persevere. PHA has given me the opportunity to speak up and to learn valuable lessons. This illness has taught me how to give when I think there is nothing left to give. It has taught me to never give up.

To read more first-person stories from people with PH, caregivers, families and friends, visit PHA’s Right Heart Blog.

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