phaware global association®

7 hours ago

I’m Aware That I’m Rare: Nicole Hogan (380)

The phaware® interview Pulmonary hypertension patient, Nicole Hogan was diagnosed in 2018. Four years later she is still grappling with her rare disease prognosis. PH has changed her life. Now she advocates for herself and the community to help make PH history. My name is Nicole Hogan, and I’m…

Rare Disease

6 min read

I’m Aware That I’m Rare: Nicole Hogan (380)

Aug 8

I’m Aware That I’m Rare: Carol Templeton (379)

The phaware® interview CTEPH patient, Carol Templeton details her complex surgery, called pulmonary thromboendarterectomy (PTE), which involves the removal of chronic clots from the lung vessel and the impact it had on her as the adoptive mom to her 18 month old daughter. My name is Carol Templeton, and…

Rare Disease

8 min read

I’m Aware That I’m Rare: Carol Templeton (379)

Aug 2

I’m Aware That I’m Rare: Kaitlyn Thompson (378)

The phaware® interview Pulmonary hypertension patient, Kaitlyn Thompson describes coming to terms with the difficult reality of not being able to carry a pregnancy due to her PH, as well as detailing an emotional recent near death experience. My name is Kaitlyn Thompson. I’m from Maryland. I was diagnosed…

Rare Disease

9 min read

I’m Aware That I’m Rare: Kaitlyn Thompson (378)

Jul 26

I’m Aware That I’m Rare: Erica Hutchison (377)

The phaware® interview Pulmonary hypertension patient, Erica Hutchison, discusses her long road to diagnosis which included multiple doctors and cardiologists telling her that her PH symptoms and panic attacks my just be “all in her head.” …

Rare Disease

6 min read

I’m Aware That I’m Rare: Erica Hutchison (377)

Jul 18

I’m Aware That I’m Rare: Stacy Physick (376)

The phaware® interview Canadian pulmonary hypertension patient, Stacy Physick was diagnosed with PH in 2011. She immediately got her affairs in order, believing she only expected to survive 1–3 years. Now, 10 years post-diagnosis she shares her journey and her conscious decision to lead a normal life. My name…

Advocacy

8 min read

I’m Aware That I’m Rare: Stacy Physick (376)

Jul 14

I’m Aware That I’m Rare: Evelyn Keltgen (374)

The phaware® interview Pediatric pulmonary hypertension patient, Evelyn Keltgen, discusses being diagnosed with PH at 6 weeks old. At age 9, Evelyn learned that her PH was connected to TBX4 gene mutation. She enjoy horseback riding, volleyball, and playing the saxophone. …

Rare Disease

5 min read

I’m Aware That I’m Rare: Evelyn Keltgen (374)

Jul 14

I’m Aware That I’m Rare: Gary Bruce (373)

The phaware® interview Pulmonary hypertension patient, Gary Bruce, discusses how meeting and marrying another PH patient changed the trajectory of his life and how she inspires him to battle his rare disease. Hello. My name is Gary Bruce. I live in Little Elm, Texas, which is about 30 miles…

Rare Disease

5 min read

I’m Aware That I’m Rare: Gary Bruce (373)

Jul 14

I’m Aware That I’m Rare: Gerry Langan (372)

The phaware® interview Gerry Langan (@itsgerrylangan), pulmonary hypertension and heart failure patient advocate, discusses how sharing her story and leveraging social media is how she took back power in an uncontrollable situation after being diagnosed with a disease that is progressive and uncontrollable. Hi, my name is Gerry Langan…

Rare Disease

11 min read

I’m Aware That I’m Rare: Gerry Langan (372)

Jul 14

I’m Aware That I’m Rare: Shavini Fernando (371)

The phaware® interview Shavini Fernando discusses her severe pulmonary hypertension diagnosis due to Eisenmenger’s Syndrome. After facing multiple cardiac arrests and strokes due to the low oxygen levels in her body, she developed OxiWear, the first ever wearable for continuous blood oxygen monitoring device that alerts patients who are prone…

Medical

10 min read

I’m Aware That I’m Rare: Shavini Fernando (371)

Jul 14

I’m Aware That I’m Rare : Catherine Falardeau (370)

The phaware® interview In this episode, scleroderma patient, Catherine Falardeau, discusses her road to diagnosis and how a right heart catheterization, led to also being diagnosed with PAH, ILD, Raynaud’s, and Pulmonary Fibrosis. Catherine recently participated in a 108 week clinical trial for the use of TYVASO® in PAH/ILD patients…

Rare Disease

6 min read

I’m Aware That I’m Rare : Catherine Falardeau (370)