Una madre de tres hijos, un asesino oculto y el especialista que la salvó
«Soy consciente de que soy única»: el podcast de phaware® «
», episodio 592 — Wendy Mercado
Wendy Mercado, paciente de hipertensión arterial pulmonar (HAP) que compaginaba su vida como profesora a tiempo completo, esposa y madre de tres hijos, siempre se ponía en último lugar hasta que su cuerpo la obligó a parar. Tras años de ir de médico en médico y de probar un medicamento tras otro, un especialista en hipertensión pulmonar se sentó por fin con ella, dibujó su corazón en un papel y le dijo las palabras que Wendy necesitaba oír: «Estamos juntos en esto». Ese momento no solo cambió su plan de tratamiento, sino también su futuro.
Tres generaciones. Un gen. Una enfermedad rara de la que no pudo escapar.
«Soy consciente de que soy especial»: el podcast de phaware® «
», episodio 578 — Dawn Ogden
Dawn Ogden ha vivido toda su vida adulta a la sombra de la hipertensión pulmonar. Tras perder a su hermana y ver cómo su padre luchaba contra la enfermedad, Dawn descubrió que era genética… y que ella misma era portadora. Lo que siguió fue toda una vida de pruebas, miedo y decisiones imposibles, al enfrentarse a la realidad de que ese mismo gen podría condicionar el futuro de sus hijos.
Un coágulo silencioso, una intervención quirúrgica de 10 horas y una segunda oportunidad de vivir
«Soy consciente de que soy única»: el podcast de phaware® «
», episodio 575 — Carol Stokely
Carol Stokely, una paciente canadiense con CTEPH, era una mujer sana, activa e imparable, hasta el día en que dejó de poder respirar. Tras meses en los que le habían dicho que no le pasaba nada, acabó ingresada en la UCI con coágulos en los pulmones que ponían en peligro su vida. Descubre cómo una intervención quirúrgica única en la vida le devolvió el aliento, las fuerzas y la vida.
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.
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.
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.
Fighter to survivor: Ashlee Bambino’s battle beyond the ring.
I’m Aware That I’m Rare: the phaware® podcast
Episode 549 - Ashlee Gambino
In this gripping episode, Ashlee “The Mobwife” Gambino shares her journey from a fierce MMA and professional boxing career to battling idiopathic pulmonary arterial hypertension. Discover how she turned her fighter’s mindset into a lifeline, navigating the unimaginable loss of her daughter, Katana, and fighting for her life with relentless determination.
How TBX4Life Is Fueling a Global Collaboration
I’m Aware That I’m Rare: the phaware® podcast
Episode 544 - LaRae Hacker
LaRae Hacker never set out to become a rare disease advocate — but when her daughter’s TBX4 diagnosis left her feeling helpless, she found power in connection. Discover how TBX4Life became her anchor in uncertainty and why she believes parent-led advocacy is the key to progress in rare disease research.
A 200 Mile Journey from LA to San Diego to Raise Awareness for PH
I’m Aware That I’m Rare: the phaware® podcast
Episode 536 - Eric Borstein
When Eric Borstein collapsed in his bedroom in 2020, doctors gave him just months to live. Instead, he fought back with walking, mental health, and the support of his community. Now, he’s leading a movement, raising hundreds of thousands for pulmonary hypertension research, and walking 200 miles down the California coast to prove hope has no limits.
When Your Child Is Diagnosed With PAH: A Mother’s Journey Through the Unknown
I’m Aware That I’m Rare: the phaware® podcast
Episode 497 - Cynthia Neilson
Cynthia Neilson shares her journey as a mother raising her daughter Claire, who was diagnosed with pulmonary arterial hypertension (PAH) at a young age. Cynthia recounts the challenges she faced navigating the medical system, the emotional toll of dealing with an unexpected diagnosis, and the difficulties of balancing family life while ensuring her daughter received the best possible care. Cynthia emphasizes the value of connection, resilience, and advocacy for families dealing with rare diseases.