To celebrate the 250th episode of our our I'm Aware That I'm Rare: the phaware® podcast series, phaware® co-founders Steve Van Wormer and Marie Rand reveal a "breathtaking" new PH Awareness short film project in a very special conversation with the film's award-winning producer & director, Elisabeth White.
Patricia Harrington is a long-term pulmonary hypertension survivor. Patricia discusses how she has battled her rare, life-threatening diagnosis by doing as much as she can to enjoy life. Though she has had to compromise her love for country dancing and exploring lighthouses, Patricia’s positive outlook and passion for PH awareness motivates to do everything possible to educate medical professionals and members of her community.
For former PH patient, Kathleen Sheffer, writing has become a tool for her to process her heart-lung transplant and the events leading up to it. Kathleen candidly shares her experience post transplant. You can also follow her journey through her blog "Rose Colored Mask" on the phaware website.
In 2000, Liz DeVivo was diagnosed with Scleroderma, a rare and chronic autoimmune disease. The disease attacked her internal organs, causing pulmonary hypertension. Due to the urgency of her condition, she was placed at the top of the transplant list in September 2001. Liz wrote a book (Holding On For Dear Life), chronicling her journey as a young mother to a heart and double lung transplant. Her transplant story was also featured in a commercial in the Super Bowl 51 broadcast.
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.
Flashback to the incredible PHinish line of the 2014 RAAM. Thank you Team PHenomenal for all your support of the PH community!