#PHAWARE BLOG
Pulmonary hypertension patient Tara Suplicki was misdiagnosed with “exercise induced asthma” for twenty years. Two decades later, Tara has become a passionate support group leader and PH advocate focused on helping newly diagnosed patients and educating the public about the importance of early diagnosis. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware #phawarepod
At the age of three, Gerry Fischer’s daughter Maleen was diagnosed with pulmonary hypertension and, as there was no treatment for this fatal disease at the time in Austria, the doctors sent her home. Her life expectancy was only a few years. In the twenty plus years since her diagnosis, Gerry went on to help raise over ten million dollars in research funds during his tenure as the head of the European Pulmonary Hypertension Association. Maleen, now 21, wrote a book about her PH journey with the inspirational message: “Every person’s life and fate has positive aspects. You only have to search for them.
CTEPH patient Arlene Shuler shares her pulmonary hypertension diagnosis story which started as breathlessness in 2005. Arlene is a dancer and awareness ambassador, who speaks to patients, medical professionals as well as staff of pharmaceutical companies to educate people about CTEPH and PH. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware
Twin brothers, Omar and Javier Estevez describe how they contracted pulmonary hypertension in the aftermath of 9-11. After their diagnosis they found hope and help from The Caring Voice Coalition. These brothers also share how important it is to engage for a cure. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware
R. James White, MD, PhD from University Rochester Medical Center talks about his fifteen year career treating pulmonary hypertension, the importance of PH awareness to the medical community and his gratitude to all patients who participate in clinical research studies. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware
Canadian pulmonary hypertension patient, Jenn Lalonde discusses her road to diagnosis, the need for PH awareness and how she is using writing as a therapeutic tool that not only benefits her but others as well. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension atwww.phaware.global. #phaware #phawarepod
Diagnosed at eighteen, Haley has made it a lifetime goal to educate on her rare lung disease, pulmonary hypertension, and often ignored brain and emotional health issues accompanied with lasting injuries and diseases. Haley is also striving toward her goal of becoming a published author. She shares her rare journey through her blog: phenomenalhaley.com. Some of her awareness artwork is also featured on the phaware365 mobile app.
Kevin Lee Burger shares his story about being diagnosed with pulmonary hypertension, the importance of PH awareness and the reasons that led him to create an online support system to meet the needs of men diagnosed with this rare disease - The PH Men's PHight Club on facebook. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware
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