Robyn Doyle is a full-time Caregiver to her daughter Bridget. She shares her PH story from Australia. Robyn shares why she’d like to be able to interact more with people who have children with PH.
In January of 2013, Lindsey and Josh Belt’s 5 year-old son Joel was diagnosed with a severe lung disease called idiopathic pulmonary hypertension (PH). Since Joel's diagnosis, the Belts have been on a mission to spread the message of HOPE! In 2013 & 2014, they hosted Color PHor A Cure 5K to raise awareness for pediatric PH research. The passionate desire to spread hope and raise awareness for PH also led the couple to create The Anchored In Hope Shop. 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.
Long term survivor Jenny Janzer shares her pulmonary hypertension diagnosis story and how she has battled depression in her tween and teen years along with PH. Jenny discusses how she uses her art not only as therapy, but to express herself and raise PH awareness. Check out Jenny's Etsy profile: www.etsy.com/shop/MostPulpListen 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
Boston native, Bill O'Donnell discusses the 15+ year journey his daughter Shannon has had with pulmonary hypertension. Bill shares his thoughts on the role of a being a pediatric caregiver and how battling PH is like running a marathon. Please also take a moment to read the letter he gave Shannon on her 15 year diagnosis anniversary (Bonus Content).
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.
Danijela Pešić is the founder of PH Serbia. She was diagnosed with pulmonary hypertension as a baby over 38 years ago. Danijela is dedicated to raising PH awareness across Serbia and Europe, on behalf of people living with the disease. She works tirelessly to ensure the availability of approved treatments and encourages research for new drugs and therapies. 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
10-year-old pulmonary hypertension patient, Andy Sagraves discusses living a life of compromise, theoretical physics and how being diagnosed with a rare disease is a gift. 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