#PHAWARE BLOG
Pulmonary hypertension and COPD patient, Gary Bruce discusses how PH has impacted his life. Gary finds strength through his faith and through the freedom of the open road to cope with his rare disease 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
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
Dr. Mark Nicolls specializes in the treatment of lung transplant patients. He has practiced pulmonary and critical care medicine for more than 18 years. He discusses the importance of clinical trails including his work in the LIBERTY Phase 2 Study; the goal of which is to block LTB4 production as a novel and potentially disease modifying treatment for PAH. For more information about the LIBERTY Study, click here.
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.
Pisana has been active in patient advocacy for 15 years, since 2001, when she and other patients suffering from pulmonary arterial hypertension founded the Italian PH patient association AIPI. In 2003 she was founding member of PHA Europe, the European federation for PH. Pisana is also a double lung transplant recipient who shares her story on the 15th anniversary of her transplant procedure. Pisana also discusses the importance of advocacy and awareness and the annual global event that is World Pulmonary Hypertension Day (May 5th) #WorldPHDay.
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