awareness

I'm Aware That I'm Rare: Lindsey and Josh Belt

I'm Aware That I'm Rare: Lindsey and Josh Belt

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

I'm Aware That I'm Rare: Tara Suplicki

I'm Aware That I'm Rare: Tara Suplicki

Pulmonary hypertension patient Tara Suplicki was misdiagnosed with “exercise induced asthma” for twenty years. Two decades later, Tara has become a passionate support group leader and PH advocate focused on helping newly diagnosed patients and educating the public about the importance of early 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 #phawarepod

I'm Aware That I'm Rare: Greg Fuller

I'm Aware That I'm Rare: Greg Fuller

He used to climb mountains, but now CTEPH patient Greg Fuller is being forced to set new goals for himself because of his rare illness. Though life has dealt him a bad hand, Greg is redefining what is possible in spite of 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 #phawarepod

I'm Aware That I'm Rare: Gerry Fischer

I'm Aware That I'm Rare: Gerry Fischer

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.

I'm Aware That I'm Rare: Gary Bruce

I'm Aware That I'm Rare: Gary Bruce

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

I'm Aware That I'm Rare: Jim White, MD

I'm Aware That I'm Rare: Jim White, MD

R. James White, MD, PhD from University Rochester Medical Center talks about his fifteen year career treating pulmonary hypertension, the importance of PH awareness to the medical community and his gratitude to all patients who participate in clinical research studies. 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

I'm Aware That I'm Rare: Patricia Harrington

I'm Aware That I'm Rare: Patricia Harrington

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.

I'm Aware That I'm Rare: David Grady

I'm Aware That I'm Rare: David Grady

Pulmonary Hypertension patient, David Grady is a retired police officer from Ohio. Because he lives along, David describes the importance of being your own advocate. David is also a proud member of the PH Men’s PHight Club on facebook. He discusses how PHight Club strives to be role models for the younger generation of males suffering from this rare, life-threatening disease.
 

I'm Aware That I'm Rare: Liz DeVivo

I'm Aware That I'm Rare: Liz DeVivo

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.

I'm Aware That I'm Rare: Stuart Berwick

I'm Aware That I'm Rare: Stuart Berwick

Long-term survivor, Stuart Berwick shares his story on the 16th anniversary of his pulmonary hypertension diagnosis. Stuart is also a cancer survivor who discusses the importance of clinical trials, the power of support groups and why volunteerism is a passion.