Testimonios de pacientes Steve Van Wormer Testimonios de pacientes Steve Van Wormer

De las campanas de boda a un diagnóstico que te cambia la vida

«Soy consciente de que soy única»: el podcast de phaware® «
», episodio 581 — Cathleen Harrington

Cathleen Harrington era joven, atlética y acababa de comprometerse cuando la hipertensión pulmonar lo cambió todo. Veintiún años después, tras pasar por una gestación subrogada, ensayos clínicos, un trasplante de pulmón y la lucha contra el rechazo, sigue aquí, sigue luchando y sigue construyendo una vida basada en la gratitud, la esperanza y sus hijos.

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Care Partner Voices, Global Voices Steve Van Wormer Care Partner Voices, Global Voices Steve Van Wormer

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.

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Testimonios de pacientes Steve Van Wormer Testimonios de pacientes Steve Van Wormer

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.

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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.

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The Diagnosis Delay That’s Still Hurting Patients

I’m Aware That I’m Rare: the phaware® podcast
Episode 545 - Victor Test, MD, FCCP

Despite better tools and more awareness, people with PH are still being diagnosed too late. Dr. Victor Test opens up about the biggest barrier in PH today: getting diagnosed on time. Learn why shortness of breath is often dismissed and how both patients and doctors can work together to catch pulmonary hypertension earlier.

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The Face of Addiction Isn’t Who You Think It Is

I’m Aware That I’m Rare: the phaware® podcast
Episode 541 - Nicholas Kolaitis, MD

Once thought to be a West Coast issue, methamphetamine-associated pulmonary hypertension is now a nationwide and global crisis. Dr. Nicholas Kolaitis reveals how building trust with meth associated-PAH patients can lead to incredible turnarounds, including sobriety, trial participation, and successful transplant.

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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.

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Testimonios de pacientes, Voces del mundo Steve Van Wormer Testimonios de pacientes, Voces del mundo Steve Van Wormer

She Never Thought This Life Was Possible: A Journey From PAH to Transplant

I’m Aware That I’m Rare: the phaware® podcast
Episode 496 - Natalie Roy

Natalie Roy is a double lung transplant survivor living in Canada. She was diagnosed with pulmonary arterial hypertension (PAH) in 2005 and received her transplant in 2017. After her transplant, Natalie experienced a difficult initial recovery but felt amazing once she started healing. The first two years were cautious, but she was able to achieve many milestones she never thought possible, including getting married, playing sports, and changing careers.

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