Episode 486 - Scott E. Olitsky, MD
I'm Aware That I'm Rare: the phaware® podcast
Release Date: 09/16/2024
Donna Wallace Harmon - phaware® interview 588
I'm Aware That I'm Rare: the phaware® podcast
She Didn’t Just Survive Being Rare. She Made Meaning Out of It. PH patient, Donna Wallace Harmon can’t fly. She lives with limits. She knows tomorrow isn’t guaranteed. But Donna refuses to live waiting for “someday.” Her motto is simple and defiant: Do the best I can when I can, because nobody knows what tomorrow holds. My name is Donna Wallace Harmon. I was born in Jamaica, but I came to Canada in my early 20s. When I was born, I was a preemie with a VSD, a hole in my heart, but it wasn't repaired until 1990, because they didn't think it necessary at the time. As I grow older and...
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Episode 588 - Donna Wallace Harmon
I'm Aware That I'm Rare: the phaware® podcast
She Didn’t Just Survive Being Rare. She Made Meaning Out of It. PH patient, Donna Wallace Harmon can’t fly. She lives with limits. She knows tomorrow isn’t guaranteed. But Donna refuses to live waiting for “someday.” Her motto is simple and defiant: Do the best I can when I can, because nobody knows what tomorrow holds. 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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Carolyn Mathur - phaware® interview 587
I'm Aware That I'm Rare: the phaware® podcast
Out of Breath, Not Out of Dreams: One Woman’s PH Journey Across 79 Countries Carolyn Mathur was told she had only hours to live. Then days. Then months. Instead of waiting to die, she chose to live—loudly, joyfully, and without apology. Nearly three decades later, she’s still here, traveling the world, and proving that hope can outlive even the bleakest diagnosis. My name is Carolyn Mathur. I'm 63. I live in Port Perry, Ontario right now. Originally, born in Nova Scotia and then, Montreal and then Toronto, and now just live in Port Perry by the lake. And it’s just a lovely view...
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Episode 587 - Carolyn Mathur
I'm Aware That I'm Rare: the phaware® podcast
Out of Breath, Not Out of Dreams: One Woman’s PH Journey Across 79 Countries Carolyn Mathur was told she had only hours to live. Then days. Then months. Instead of waiting to die, she chose to live—loudly, joyfully, and without apology. Nearly three decades later, she’s still here, traveling the world, and proving that hope can outlive even the bleakest diagnosis. Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: .
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Sherri Odusanya - phaware® interview 586
I'm Aware That I'm Rare: the phaware® podcast
Pulmonary Hypertension Tried to Shrink Her World. She Made It Bigger. Being prescribed oxygen broke PAH patient, Sherri Odusanya, in a way her diagnosis hadn’t. Sleeping beside a roaring machine. Dragging tanks through daily life. Crying in the car after picking up her daughter from school. Then came the real gut punch… doctors warning she might never fly again. For a woman who loved travel and had family across the ocean, it felt like her world was closing in. My name is Sherri Odusanya. I'm originally from Boston, Massachusetts, but have now been living in San Diego, California since...
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Episode 586 - Sherri Odusanya
I'm Aware That I'm Rare: the phaware® podcast
Pulmonary Hypertension Tried to Shrink Her World. She Made It Bigger. Being prescribed oxygen broke PAH patient, Sherri Odusanya, in a way her diagnosis hadn’t. Sleeping beside a roaring machine. Dragging tanks through daily life. Crying in the car after picking up her daughter from school. Then came the real gut punch… doctors warning she might never fly again. For a woman who loved travel and had family across the ocean, it felt like her world was closing in. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share...
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Kathy Ilano - phaware® interview 585
I'm Aware That I'm Rare: the phaware® podcast
Misdiagnosed at 19, Married After Heart Failure and Living Moment to Moment Pulmonary hypertension patient, Kathy Ilano believed she’d never marry. Until she met her husband at her high school reunion. Still recovering from heart failure, carrying grief, fear, and a sodium-restricted diet, Kathy disclosed her illness on their very first date, convinced he wouldn’t stay. He did. Their love story unfolds alongside IV pumps, emergency drives, and an unwavering partnership. My name is Kathy Ilano. I was diagnosed in 2001, but I knew I had pulmonary hypertension when I was 19. I was officially...
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Episode 585 - Kathy Ilano
I'm Aware That I'm Rare: the phaware® podcast
Misdiagnosed at 19, Married After Heart Failure and Living Moment to Moment Pulmonary hypertension patient, Kathy Ilano believed she’d never marry. Until she met her husband at her high school reunion. Still recovering from heart failure, carrying grief, fear, and a sodium-restricted diet, Kathy disclosed her illness on their very first date, convinced he wouldn’t stay. He did. Their love story unfolds alongside IV pumps, emergency drives, and an unwavering partnership. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a...
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Christina Ryan - phaware® interview 584
I'm Aware That I'm Rare: the phaware® podcast
She Was the Caregiver Until Pulmonary Hypertension Made Her the Patient For Christine Ryan, being ill wasn’t the hardest part, letting others care for her was. Diagnosed with pulmonary hypertension after years of managing scleroderma, she struggled not with weakness, but with surrender. Used to pushing through pain for everyone else, Christine had to relearn how to listen to her body and accept limits without losing her sense of purpose. My name's Christine Ryan. I'm currently and have been the living last 20 years in St. Catherine's. I received services for PH in Hamilton at St. Joe's. I...
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Episode 584 - Christine Ryan
I'm Aware That I'm Rare: the phaware® podcast
She Was the Caregiver Until Pulmonary Hypertension Made Her the Patient For Christine Ryan, being ill wasn’t the hardest part, letting others care for her was. Diagnosed with pulmonary hypertension after years of managing scleroderma, she struggled not with weakness, but with surrender. Used to pushing through pain for everyone else, Christine had to relearn how to listen to her body and accept limits without losing her sense of purpose. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like,...
info_outlineIn this episode, Dr. Scott Olitsky, the Global Center of Excellence Outreach Director for Cure HHT, discusses hereditary hemorrhagic telangiectasia (HHT), a genetic disease characterized by abnormal blood vessel development. HHT can cause bleeding in various parts of the body, with nosebleeds being the most common symptom. In some cases, HHT can lead to the development of pulmonary arterial hypertension (PAH). Medications that dilate blood vessels can worsen bleeding in HHT patients. Dr. Olitsky shares his personal connection to HHT and PAH and highlights the efforts of Cure HHT to improve diagnosis and treatment options for patients.
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 @curehht