Who Cares for the Caregiver When Everyone Else Comes First?
I’m Aware That I’m Rare: the phaware® podcast
Episode 579 - Laura Camponeschi
Behind every pulmonary hypertension patient is someone quietly running on empty. Laura Camponeschi pulls back the curtain on caregiver burnout — the emotional, mental, and physical toll that builds when someone is “always on” and never feels safe stepping away.
Three Generations. One Gene. A Rare Disease She Couldn’t Outrun.
I’m Aware That I’m Rare: the phaware® podcast
Episode 578 - Dawn Ogden
Dawn Ogden has lived her entire adult life under the shadow of pulmonary hypertension. After losing her sister and watching her father battle the disease, Dawn learned it was genetic — and that she carried it. What followed was a lifetime of testing, fear, and impossible choices as she faced the reality that the same gene could shape her children’s futures.
She Went Looking for Answers and Ended Up Building a Support Group
I’m Aware That I’m Rare: the phaware® podcast
Episode 577 - Carla Kinsey
Before Zoom, before Facebook groups, pulmonary hypertension patient, Carla Kinsey, had only a voice on a phone line. That loneliness pushed her to do something terrifying: start a support group herself. What began as a need for connection became a lifeline for countless patients navigating rare disease.
PH Tried to Isolate Her. She Turned Loneliness into a Lifeline for Others
I’m Aware That I’m Rare: the phaware® podcast
Episode 576 - Karen Sawyer
Pulmonary hypertension nearly stole Karen Sawyer’s sense of self. Instead, Karen rebuilt it through advocacy, education, and human connection, proving that no one should face a rare disease alone.
The Loneliness of Pulmonary Hypertension
I’m Aware That I’m Rare: the phaware® podcast
Episode 556 - Lenise Whitley
After years of being dismissed, misdiagnosed, and told nothing was wrong, Lenise Whitley finally got an answer - pulmonary hypertension. In this powerful episode, she shares her journey through cardiac arrest, loss, faith, and isolation, and how support groups, advocacy, and self-belief helped her reclaim her voice. A raw, honest reminder of why being heard can be lifesaving.