#PHAWARE BLOG
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.
Dr. Ian Adatia has spent the last 25 years helping to improve care for babies, children and young people with pulmonary vascular disease. He is a clinician scholar and researcher. He has developed innovative therapies for children with pulmonary hypertension, and the first childhood pulmonary hypertension clinic in North America.
CTEPH patient, Pam Kehoe is a member of the CTEPH Advisory Board (www.CTEPH.com) She discusses her diagnosis and how it was confirmed only after receiving a V/Q (ventilation/perfusion) scan.
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.
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.
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
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
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
Our new phaware™ podcast series devoted to raising global pulmonary hypertension awareness launches Monday October 24th.
New Episodes will be released every Monday & Thursday leading up to November's #phaware-ness Month and throughout the remainder of 2016!
What's the most convenient way to access this series of impactful, insightful and most importantly, hopeful conversations with members of the global PH community?
Get our all new custom smartphone app (for iPhone™, Android™, Microsoft Windows™ and Amazon™ devices) available for FREE on the app stores.
In a statement on the famous singer death, Natalie Cole's family said idiopathic pulmonary arterial hypertension led to her heart failure.
http://www.usatoday.com/videos/life/people/2016/01/07/78439488/
Sept 17-20 is the Annual Pulmonary Hypertension European Conference in Barcelona!!!!
73 PH Patient Leaders from 32 European countries are attending; PHA Europe has a very wide ranging program and a prestigious panel of speakers lined up! #APHEC2015 #phaware
Are you #phaware? phaware.global and our phaware app features the most up-to-date disease specific daily news from BioNews Services, who are proud to be phaware collaborators disseminating daily news feeds from our Pulmonary Hypertension News, Lung Disease News, Pulmonary Fibrosis News and Scleroderma News sites.
It's a good week to #thinkbig and be #phaware. phaware launches www.phaware.global. Jeffrey Hayzlett releases his book. #csuite
Engage for a cure. Like & follow @phaware across social media.
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Invite others to heighten global pulmonary hypertension awareness and help make PH history.
