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.
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
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
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.