Laura Camponeschi - phaware® interview 579
I'm Aware That I'm Rare: the phaware® podcast
Who Cares for the Caregiver When Everyone Else Comes First? 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. I am Laura Camponeschi. I am the medical office coordinator for the Johns Hopkins Pulmonary Hypertension Program. I have been with the office since 2009, so about 16 years, and I am privileged to be the support group leader for the Johns Hopkins PHA support...
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Episode 579 - Laura Camponeschi
I'm Aware That I'm Rare: the phaware® podcast
Who Cares for the Caregiver When Everyone Else Comes First? 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. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: .
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Dawn Ogden - phaware® podcast interview 578
I'm Aware That I'm Rare: the phaware® podcast
Three Generations. One Gene. A Rare Disease She Couldn’t Outrun. 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. I am Dawn Ogden. I am from Salt Lake City, Utah. I came to be aware of pulmonary hypertension about 30 years ago when my sister was diagnosed. Then, when we found out a...
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Episode 578 - Dawn Ogden
I'm Aware That I'm Rare: the phaware® podcast
Three Generations. One Gene. A Rare Disease She Couldn’t Outrun. 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. Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: .
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Carla Kinsey - phaware® podcast interview 577
I'm Aware That I'm Rare: the phaware® podcast
She Went Looking for Answers and Ended Up Building a Lifeline 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. My name is Carla Kinsey. I live in Rochester Hills, Michigan, which is a suburb of Detroit. I was diagnosed in 2013 with idiopathic pulmonary arterial hypertension. After four years of progressively worse symptoms to the point...
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Episode 577 - Carla Kinsey
I'm Aware That I'm Rare: the phaware® podcast
She Went Looking for Answers and Ended Up Building a Lifeline 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. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: .
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Karen Sawyer - phaware® interview 576
I'm Aware That I'm Rare: the phaware® podcast
PH Tried to Isolate Her. She Turned Loneliness into a Lifeline for Others 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. My name's Karen Sawyer. I joined the Pulmonary Hypertension Association right after I was diagnosed. It was around 2013. I connected with other PH patients. That really helped me, especially through support groups and mentoring on the phone so I could call someone that had my disease. I was really excited about that, because...
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Episode 576 - Karen Sawyer
I'm Aware That I'm Rare: the phaware® podcast
PH Tried to Isolate Her. She Turned Loneliness into a Lifeline for Others 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. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: .
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Carol Stokley - phaware® interview 575
I'm Aware That I'm Rare: the phaware® podcast
A Silent Blood Clot, a 10-Hour Surgery, and a Second Chance at Life Canadian CTEPH patient, Carol Stokley was healthy, active, and unstoppable, until the day she couldn’t breathe. After months of being told nothing was wrong, she collapsed into ICU with life-threatening clots in her lungs. Hear how a once-in-a-lifetime surgery gave her breath, strength, and life back. I'm Carol Stokley. I'm from Brights Grove, Ontario which is just outside of Sarnia, Ontario, a small community. How I got on this path was through a CTEPH diagnosis. Basically, I just couldn't breathe. For my age in excellent...
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Episode 575 - Carol Stokley
I'm Aware That I'm Rare: the phaware® podcast
A Silent Blood Clot, a 10-Hour Surgery, and a Second Chance at Life Canadian CTEPH patient, Carol Stokley was healthy, active, and unstoppable, until the day she couldn’t breathe. After months of being told nothing was wrong, she collapsed into ICU with life-threatening clots in her lungs. Hear how a once-in-a-lifetime surgery gave her breath, strength, and life back. Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: . #CTEPH
info_outlineThree Generations. One Gene. A Rare Disease She Couldn’t Outrun.
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.
Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.global Like, Subscribe and Follow us: www.phawarepodcast.com.