Episode 453 - PHenomenal Hope 2023
I'm Aware That I'm Rare: the phaware® podcast
Release Date: 01/29/2024
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
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Jenny Yang, MD - phaware® interview 574
I'm Aware That I'm Rare: the phaware® podcast
From “Untreatable” to Life-Changing: The New Era of CTEPH Care What happens when patients are told everything looks “normal” but they still can’t breathe? Dr. Jenny Yang explains how new testing and team-based care are solving one of pulmonary medicine’s most overlooked mysteries and changing what’s possible for CTEPH patients. This Special Edition episode is sponsored by . My name is Dr. Jenny Yang. I'm an Associate Professor of Medicine at the University of California, San Diego. I did all my training at UCSD. I did my residency and fellowship and graduated in 2021 and...
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Episode 574 - Jenny Yang, MD
I'm Aware That I'm Rare: the phaware® podcast
From “Untreatable” to Life-Changing: The New Era of CTEPH Care What happens when patients are told everything looks “normal” but they still can’t breathe? Dr. Jenny Yang explains how new testing and team-based care are solving one of pulmonary medicine’s most overlooked mysteries and changing what’s possible for CTEPH patients. This Special Edition episode is sponsored by . Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: . #phawareMD #CTEPH
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Eric Borstein - phaware® interview 573
I'm Aware That I'm Rare: the phaware® podcast
Why “The Walking Guy” Trusts His Therapist as Much as His Cardiologist For PAH patient, Eric Borstein, walking started as a way to survive medication side effects. Now, it has become a way to survive himself. Each step pulling “EB” further from an ICU bed and closer to an identity that isn’t defined by illness. Mental health has reshaped his recovery, and has become one of the lifelines he believes should be prescribed alongside life-saving therapies. I'm Eric Borstein. Five years ago, I was diagnosed with pulmonary arterial hypertension. I collapsed and nearly died. I spent 16...
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Episode 573 - Eric Borstein
I'm Aware That I'm Rare: the phaware® podcast
Why “The Walking Guy” Trusts His Therapist as Much as His Cardiologist For PAH patient, Eric Borstein, walking started as a way to survive medication side effects. Now, it has become a way to survive himself. Each step pulling “EB” further from an ICU bed and closer to an identity that isn’t defined by illness. Mental health has reshaped his recovery, and has become one of the lifelines he believes should be prescribed alongside life-saving therapies. Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your story: Like, Subscribe and Follow...
info_outlineIn this episode, Drs. Patricia George and Harrison "Hap" Farber from Team PHenomenal Hope discuss takeaways and learning from PHenomenal Hope 2023. This symposium offered a combination of oral presentations, expert panel discussions, and poster sessions in an environment that encourages collaboration and a deeper exploration of patient-centered research.
They also discuss Team PH's 2024 Research Award program, looking for topics that will help expand access to care and improve clinical status by looking specifically for projects in the topic areas outlined at the PHenomenal Hope 2023 research meeting.
Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: info@phaware.com #phawareMD