De «incurable» a «que cambia la vida»: la nueva era de la atención médica de la HEPCT
«Soy consciente de que soy única»: el podcast de phaware® «
», episodio 574 — Dra. Jenny Yang
¿Qué ocurre cuando a los pacientes se les dice que todo parece «normal», pero siguen sin poder respirar? La Dra. Jenny Yang explica cómo las nuevas pruebas y la atención en equipo están resolviendo uno de los misterios más ignorados de la medicina pulmonar y cambiando las perspectivas de los pacientes con HEP-CTE.
Why “The Walking Guy” Trusts His Therapist as Much as His Cardiologist
I’m Aware That I’m Rare: the phaware® podcast
Episode 573 - Eric Borstein
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.
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.
She’d Never Been Sick - Until a Rare Disease Hit Like a Brick Wall
I’m Aware That I’m Rare: the phaware® podcast
Episode 570 - Terrie Keplinger
Terri Keplinger went from healthy and unstoppable to fighting for breath after unexplained swelling and a shocking ER visit led to a pulmonary arterial hypertension diagnosis. In this episode, she shares how denial turned into purpose, and how she transformed her fight into advocacy, support, and a mission to help others get diagnosed before it’s too late.
From Newlywed to Newly Diagnosed
I’m Aware That I’m Rare: the phaware® podcast
Episode 569 - Rey Adam Rodriguez
Six months after saying “I do,” Rey Adam Rodriguez was told he had pulmonary arterial hypertension. Rey shares his whirlwind journey through misdiagnosis, a new baby, and finding hope through expert care and peer support.
She Was Prepared for Breast Cancer Not for a Rare, Incurable Disease
I’m Aware That I’m Rare: the phaware® podcast
Episode 568 - Sherry Rouse
At 30, Sherry Rouse went in for a breast cancer screening. What doctors found instead wasn’t cancer, but was something far rarer, and potentially fatal: idiopathic pulmonary arterial hypertension Sherry recounts the emotional rollercoaster of being blindsided by a rare illness and how she turned that chaos into advocacy and hope.
The Insurance Plan You Never Knew You Needed
I’m Aware That I’m Rare: the phaware® podcast
Episode 567 - Nicholas Kolaitis, MD
What does a lung transplant have in common with car insurance? More than you’d think. Dr. Nicholas Kolaitis shares why seeing a transplant team early, even if you’re stable, can help protect your future.
The Most Dangerous Phrase in Rare Disease: “You Look Fine.”
I’m Aware That I’m Rare: the phaware® podcast
Episode 566 - Lala Juarez
Diagnosed with idiopathic pulmonary arterial hypertension in her early 20s after years of being dismissed, Lala Juarez knows what it’s like to be told “you look fine” while fighting for breath. In this deeply honest conversation, she shares her journey from misdiagnosis and IV therapy to the shock of being told it was finally “time” for a double lung transplant. Now four years post-transplant, Lala reflects on rediscovering everyday joys, navigating loss and trauma, and why support groups became a lifeline that made her feel seen, validated, and never alone.
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.
Two Rare Diagnoses, One Powerful Partnership
I’m Aware That I’m Rare: the phaware® podcast
Episode 564 - Neal McDermott and Steve Mathai, MD
Scleroderma and PAH: Patient, Neal McDermott and Dr. Steve Mathai unpack how the intersection of two rare diseases requires trust, early action, and deeply personalized care. This episode explores what happens when medical expertise meets patient resilience, and why collaboration and clinical trials matter more than ever in changing the outcomes of rare disease.
The Hidden Daily Battles of Pulmonary Hypertension Patients
I’m Aware That I’m Rare: the phaware® podcast
Episode 563 - Khushboo Goel, MD
Behind the clinical charts and heart catheterizations lies a world of emotional, financial, and physical challenges that PH patients face every day. Dr. Khushboo Goel opens up about what she’s learned from patients in support groups — and how it’s reshaping her approach to care.
Why the Clues to Pulmonary Hypertension Start Before Birth
I’m Aware That I’m Rare: the phaware® podcast
Episode 562 - Ripla Arora, PhD
When Ripla Arora first studied TBX4 as a young PhD student, no one imagined this gene held secrets to life-threatening lung diseases. Now, years later, her early work is the foundation of a global effort to unlock the fetal origins of pulmonary hypertension.
Cracking the Code: How Genetics Is Rewriting Neonatal Medicine
I’m Aware That I’m Rare: the phaware® podcast
Episode 561 - Jeffrey Whitsett
Dr. Jeffrey Whitsett reflects on five decades in neonatal care, tracing the evolution from limited support for preemies to today’s cutting-edge genetic discoveries. Discover how rare gene mutations like TBX4 are reshaping our understanding of lung development and why collaboration with families is key to the next era of life-saving treatments.
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.
How an AI Stethoscope Could Transform Global Healthcare
I’m Aware That I’m Rare: the phaware® podcast
Episode 557 - Gaurav Choudhary, MD
What if diagnosing PH didn’t require an echo or heart catheterization — but just a AI powered stethoscope? Dr. Gaurav Choudhary talks real-world use cases, validation studies, and the global potential of portable, AI-powered diagnostics in under-resourced settings.
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.
One Teacher’s Unexpected Battle with a Silent Killer
I’m Aware That I’m Rare: the phaware® podcast
Episode 555 - Nicole Fitzgerald
Nicole Fitzgerald was a full-time special ed teacher juggling work, family, and a big move — until breathlessness and fatigue nearly took her life. What started as stress turned into a life-threatening diagnosis. This is the story of how she faced pulmonary hypertension head-on and redefined her purpose.