She Checked the Organ Donor Box at 16, Now She’s Waiting for Someone Else’s Lungs
I’m Aware That I’m Rare: the phaware® podcast
Episode 594 - Kirsty McGeown
Canadian pulmonary hypertension patient, Kirsty McGeown signed up to be an organ donor as a teenager, believing it was a simple act of kindness. Years later, Kirsty found herself sitting on the opposite side of that decision. Now, she’s focused on reclaiming life’s normal moments, holding onto hope, and dreaming of one day becoming a grandmother.
23 Years of Survival and Still Fighting the Darkness No One Sees.
I’m Aware That I’m Rare: the phaware® podcast
Episode 591 - Jenn Lalonde
Surviving a rare disease isn’t always heroic. Sometimes it’s depression, isolation, and wondering if you’re even “sick enough” to deserve the label anymore. Canadian pulmonary hypertension patient, Jenn Lalonde, battles imposter syndrome on her good days and crushing heaviness on the bad ones. Because even when your body stabilizes, your mind doesn’t always follow.
She Didn’t Just Survive Being Rare. She Made Meaning Out of It.
I’m Aware That I’m Rare: the phaware® podcast
Episode 588 - Donna Wallace Harmon
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.
Out of Breath, Not Out of Dreams: One Woman’s PH Journey Across 79 Countries
I’m Aware That I’m Rare: the phaware® podcast
Episode 587 - Carolyn Mathur
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.
Misdiagnosed at 19, Married After Heart Failure and Living Moment to Moment
I’m Aware That I’m Rare: the phaware® podcast
Episode 585 - Kathy Ilano
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.
She Was the Caregiver Until Pulmonary Hypertension Made Her the Patient
I’m Aware That I’m Rare: the phaware® podcast
Episode 584 - Christine Ryan
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.
The Dream She Lost at 18 and the Child Who Gave It Back
I’m Aware That I’m Rare: the phaware® podcast
Episode 583 - Amanda Chickie
One of the first questions Amanda Chickie asked after her pulmonary hypertension diagnosis wasn’t about life expectancy, it was about motherhood. The answer devastated her. Told that pregnancy was too dangerous, Amanda reflects on what it means to mourn children you’ll never carry, how that grief shaped her mental health, and how hope slowly returned in a form she never expected.
A New Mother’s Greatest Fear: “Am I Going to See My Daughter Grow Up?”
I’m Aware That I’m Rare: the phaware® podcast
Episode 582 - Lisa Harder
When Lisa Harder became a new mom, she never imagined that shortness of breath would lead to a rare, life-altering diagnosis. Lisa shares how uncertainty nearly stole her future and how breakthrough treatment, advocacy, and hope gave it back.
A Silent Blood Clot, a 10-Hour Surgery, and a Second Chance at Life
I’m Aware That I’m Rare: the phaware® podcast
Episode 575 - Carol Stokely
Canadian CTEPH patient, Carol Stokely 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.
Don’t Let PH Ground You: A Real-World PH Travel Playbook
I’m Aware That I’m Rare: the phaware® podcast
Episode 572 - Nicole Dempsey
For Nicole Dempsey, travel has always meant freedom. After being diagnosed with pulmonary hypertension, that freedom suddenly felt fragile. Nicole shares how she continues to explore the world, raise her family, and find freedom beyond fear, proving that even with a rare disease, life doesn’t have to stop.
He Sent 100 Emails to Save His Wife… Only 3 Doctors Answered
I’m Aware That I’m Rare: the phaware® podcast
Episode 571 - Florin Dumitrescu
From a devastating diagnosis to a lung transplant that changed everything, Florin Dumitrescu shares how mindset, persistence, and community carried his family through their darkest moment and how survival transformed into advocacy for pulmonary hypertension patients across Europe.
The Daily Discipline of PH: Living by the Liter and Label
I’m Aware That I’m Rare: the phaware® podcast
Episode 565 - Angela Brown
Most people don’t count every sip of water or every grain of salt. Angela Brown does. This episode dives into the daily discipline required to live with pulmonary hypertension — from navigating restaurant menus to surviving a exotic vacations in sweltering heat with strict fluid and sodium limits.
From Knee Pain to Gene Discovery: One Family’s Unexpected Diagnosis
I’m Aware That I’m Rare: the phaware® podcast
Episode 560 - Luke Stockdale
What started as routine investigations into hereditary knee problems turned into a life-altering discovery for Luke Stockdale and his family - a TBX4 gene mutation linked to pulmonary arterial hypertension (PAH). In this episode, Luke shares how his mother’s journey through years of respiratory care led to a rare diagnosis, and how it’s changed the course of his entire family’s future. With candor and urgency, he discusses the emotional weight of genetic testing, the inconsistencies in clinical care, and his mission to advocate for early detection and standardized monitoring.
How a Global Team Is Rewriting the TBX4 Playbook
I’m Aware That I’m Rare: the phaware® podcast
Episode 559 - Matina Prapa, MD, PhD and Olivier Danhaive, MD
Rare diseases thrive in isolation. TBX4Life is changing that. In this episode, Drs. Prapa and Danhaive share how international collaboration is creating real-time change for patients. From newborn screening to natural history studies to rethinking how we talk about genetic testing, they’re helping create a roadmap to a cure.
One Dad’s Mission to Cure His Son’s Genetic Disease
I’m Aware That I’m Rare: the phaware® podcast
Episode 558 - Anton Morkin
When Anton Morkin’s son was diagnosed with “idiopathic” pulmonary hypertension, he refused to accept “no known cause” as an answer. What followed was a crash course in genetics, the discovery of a rare mutation, and the formation of a worldwide coalition, TBX4Life.
Groundbreaking Advancements in Transplant Technology
I’m Aware That I’m Rare: the phaware® podcast
Episode 531 - John Granton, MD
Dr. John Granton, a critical care and transplant physician at Toronto General Hospital, shares his journey in pulmonary hypertension and lung transplantation, detailing the groundbreaking advancements in transplant technology. He discusses the evolution of lung preservation methods, the challenges of chronic rejection, and the hope for longer-lasting transplants. With a passion for improving patient outcomes, Dr. Granton envisions a future where transplant becomes obsolete — replaced by treatments that cure underlying diseases.
7th WSPH Task Force 1:The Patient Perspective
I’m Aware That I’m Rare: the phaware® podcast
Episode 526 - Hall Skaara
Hall Skaara, representing PHA Europe, brought the patient perspective to the forefront at the World Symposium on Pulmonary Hypertension, joining other members of Task Force 1. PHA Europe was well-represented with delegates including Eva Otter, Monika Tschida, Natalia Maeva, Tadeja Ravnik, and Nina Kobler. This prestigious event gathered over 1,500 of the brightest minds in the field of pulmonary hypertension, offering a unique opportunity for patients and professionals to collaborate and share insights, as well as for patient associations to network.
Why Pulmonary Hypertension Isn’t Just a Lung Problem.
I’m Aware That I’m Rare: the phaware® podcast
Episode 525 - Lisa Mielniczuk, MD
Cardiologist Dr. Lisa Mielniczuk from the Mayo Clinic pulls back the curtain on one of the most common — yet misunderstood — forms of pulmonary hypertension: the kind caused by left heart disease. In this episode, she explains why it’s time we stop thinking of PH as a rare condition.
Beyond the Clinical Trial: What Real-World Data Means for You.
I’m Aware That I’m Rare: the phaware® podcast
Episode 524 - Jason Weatherald, MD
Think only people in clinical trials help advance medicine? Think again. Dr. Jason Weatherald explains how your everyday clinic visits — from walk tests to how you feel — can help shape the future of pulmonary hypertension treatment. Learn what “real-world evidence” is and why your story matters more than you think.
From Senior Hockey to Everyday Survival: Living With CTEPH
I’m Aware That I’m Rare: the phaware® podcast
Episode 508 - Stephen Gariepy
Canadian resident, Stephen Gariepy, was diagnosed with Chronic Thromboembolic Pulmonary Hypertension (CTEPH) in 2018. After initially being active in senior hockey, his condition worsened, leading to difficulty breathing and performing daily tasks. Gariepy continues to live with this rare and terminal disease, adapting to the limitations it imposes on his daily life.