A Volunteer Who Lives PHA’s Mission In 2013, when Thekla McGinley was diagnosed with pulmonary hypertension (PH), she stayed away from support groups for several years because she didn’t want to talk about it — to anyone. Today, Thekla talks to everyone, even the governor of Arkansas. Finding medical professionals who could help her live with and understand the disease was not easy. As her diagnosis started to sink in, and finding proper treatment became one emotionally charged challenge after another, Thekla looked for answers and support online. She came across the Pulmonary Hypertension Association (PHA) website, and her life was forever changed. “If it weren’t for PHA and one particular pharmacist, I wouldn’t be here right now,” says Thekla, referring to the importance of obtaining quality treatment to help extend the lives of individuals with PH. She initially connected to the PHA via email and telephone; she soon joined Facebook groups and a nearby support group. Attending PHA’s International Conference left Thekla overcome with the “best normal feeling” since her diagnosis, and she sought ways to give back to the PH community. She talked to her U.S. senators and representative about the challenges of living with PH and how they could help. She even succeeded in getting Gov. Asa Hutchinson to sign a proclamation declaring November Pulmonary Hypertension Awareness Month. Now a highly involved patient advocate and PHA support group leader in Central Arkansas, Thekla believes that “no one should go through the hell I went through those first few years of living with PH.” She shows newly diagnosed individuals there is quality of life beyond the diagnosis, that life-changing support is available through PHA and they don’t need to face the many PH challenges alone.
“I realized I have a voice! This Congressman … now has a face and stories to remind him why he should support [PHA’s legislative priorities]. Enjoyed this very much and couldn’t have done it without help from PHA.” – Thekla McGinley, after making her first legislative visit 2019 PHA Annual Report
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