La PH no solo cambió una vida, sino toda una familia.
«Soy consciente de que soy diferente»: el podcast de phaware® «
», episodio 589: Abby y Ari Borstein
Cuando la hipertensión pulmonar cambió la vida de su padre, Eric Borstein, las hermanas Abby y Ari se negaron a dejar que la enfermedad escribiera el final. En cambio, su familia convirtió el dolor en esperanza creando una comunidad llamada «¿Dónde está EB?». , una carrera de 5 km dedicada a sensibilizar a la sociedad, rendir homenaje a su padre y apoyar a otras personas que se enfrentan a la misma enfermedad rara.
Lo que comenzó como la respuesta de una familia ante una adversidad inimaginable se ha convertido en algo mucho más grande: un movimiento que demuestra que cada paso que se da puede aportar esperanza a alguien que aún busca respuestas.
¿Quién cuida del cuidador cuando todos los demás son lo primero?
«Soy consciente de que soy única»: el podcast de phaware® «
», episodio 579 — Laura Camponeschi
Detrás de cada paciente con hipertensión pulmonar hay alguien que, en silencio, funciona al límite de sus fuerzas. Laura Camponeschi nos descubre el agotamiento del cuidador: el desgaste emocional, mental y físico que se va acumulando cuando alguien está «siempre en marcha» y nunca se siente seguro para tomarse un respiro.
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.
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 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.
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.
Rare Disease in Rural Minnesota: A Mother’s Journey Through PH & HHT
I’m Aware That I’m Rare: the phaware® podcast
Episode 491 - Sarah Stone
Sarah Stone shares the story of her family’s journey with rare medical conditions in North Central Minnesota. Sarah’s life took a turn when her daughter began showing unusual symptoms, eventually diagnosed with pulmonary hypertension, a rare condition complicated by her family’s genetic predisposition to HHT. As their medical challenges unfolded with two of her three children facing life-threatening conditions, Sarah discusses the trials of managing these complex issues while living in a remote area. She delves into the lessons learned, the importance of specialized medical care, and the determination to live life fully despite the circumstances.