El sueño que perdió a los 18 años y el niño que se lo devolvió
«Soy consciente de que soy especial»: el podcast de phaware® «
», episodio 583 — Amanda Chickie
Una de las primeras preguntas que se hizo Amanda Chickie tras su diagnóstico de hipertensión pulmonar no fue sobre la esperanza de vida, sino sobre la maternidad. La respuesta la dejó devastada. Tras enterarse de que el embarazo era demasiado peligroso, Amanda reflexiona sobre lo que significa llorar la pérdida de los hijos que nunca llevará en su vientre, cómo ese dolor afectó a su salud mental y cómo la esperanza volvió poco a poco de una forma que nunca habría imaginado.
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.
You Can Grieve and Still Fight: Love, Loss, and Living with PAH
I’m Aware That I’m Rare: the phaware® podcast
Episode 553 - Jasmine Wells
She cried for the life she lost. Then, she fought for the one she has. PAH patient, Jasmine Wells discusses what it really means to grieve the old you while finding purpose in the new. From navigating relationships, infections, and fear of transplant, to leading support groups and fighting misinformation.
Scars and Survival: Rebuilding Life After a Devastating Diagnosis
I’m Aware That I’m Rare: the phaware® podcast
Episode 548 - Sophia Esteves
After countless hospital stays, new medications, and near-breaking points, Sophia Esteves found the reason she wanted to live — and it wasn’t just for herself. This episode dives into her spiritual and emotional transformation from patient to powerhouse advocate, and how she now helps others reclaim hope through honesty and grit.