ADVOCATING FOR HERSELF AND OTHERS

Diane Ramirez learned about the power of her voice at the Pulmonary Hypertension Association (PHA)’s International PH Conference and Scientific Sessions in 2008. Later that summer, she scheduled a meeting with a member of Congress.

“There were five patients in that meeting, and we all felt heard,” says Diane, of Lexington, North Carolina. “It was incredible.”

Since then, Diane has advocated for pulmonary hypertension (PH) awareness, research and education and has no intention of stopping. In addition to serving on PHA’s Board of Trustees for 10 years, she is a support group leader for North Carolina’s Piedmont area. She tries to help other patients as much as she can, and she says meeting lawmakers and speaking up for herself and others is part of what keeps her alive.

“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,” she says.

Diane says PH taught her how to persevere. It taught her how to give when she thought she had nothing left to give. It taught her to never give up. “I learned to enjoy all the moments life has to offer: to laugh, dance when I can, call a friend and be a friend.

Diane was 24 when she was diagnosed with pulmonary arterial hypertension. Her work, school and social life had to change. There were no treatments for PH. And PHA and its support groups didn’t yet exist.

“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.”

Today, she has a better understanding of PH and what it entails. She takes three FDA-approved medications to treat PH and receives treatment at Duke University Medical Center, a PHA-accredited PH Care Center.

She no longer feels alone and scared. And she is happy and grateful to be alive.