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.
Diagnosticada erróneamente a los 19 años, se casó tras sufrir una insuficiencia cardíaca y vive el momento
«Soy consciente de que soy única»: el podcast de phaware® «
», episodio 585 — Kathy Ilano
Kathy Ilano, una paciente con hipertensión pulmonar, creía que nunca se casaría. Hasta que conoció a su marido en la reunión de antiguos alumnos de su instituto. Aún convaleciente de una insuficiencia cardíaca, sumida en el dolor y el miedo, y sometida a una dieta baja en sodio, Kathy le reveló su enfermedad en su primera cita, convencida de que él no se quedaría. Pero se quedó. Su historia de amor se desarrolla entre bombas de infusión, desplazamientos de urgencia y una unión inquebrantable.
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.
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.
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.
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.
The Pulse of a Fighter: Survival, Stigma, and Shaking Up Healthcare
I’m Aware That I’m Rare: the phaware® podcast
Episode 552 - Kevin Allen
They told him he had months to live. He used them to rewrite the rules. Kevin Allen survived near-death, systemic medical neglect, and an invisible disability most physicians don’t understand. Today, he’s pushing policy, pressuring universities, and pioneering new models of PH patient-centered care.
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.
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.
Treating Meth-Associated PAH Without Judgment
I’m Aware That I’m Rare: the phaware® podcast
Episode 542 - Brandon Jakubowski, MD
Dr. Brandon Jakubowski takes us into the underrecognized world of stimulant-induced pulmonary arterial hypertension. From misdiagnoses to under-prescribing life-saving therapies, he lays out the systemic gaps and stigmas preventing patients from getting the care they need.
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.
How Stigma Blocks Meth-PAH Treatment and How to Stop It
I’m Aware That I’m Rare: the phaware® podcast
Episode 540 - Peter Leary, MD
Patients with methamphetamine-associated-PAH often arrive at clinics already carrying heavy shame. But shame shouldn’t be part of their medical history. In this compelling episode, Dr. Peter Leary explains how stigma — from both society and providers — can delay life-saving care. Learn how a change in mindset, language, and compassion can transform outcomes for a neglected and growing patient population.
The Hidden PH Epidemic: What Methamphetamine Use Is Teaching Us About Pulmonary Hypertension
I’m Aware That I’m Rare: the phaware® podcast
Episode 538 - John Kingrey, MD
Dr. John Kingrey exposes the rising crisis of meth-induced pulmonary hypertension, a condition spreading fast across the U.S. He challenges misconceptions, highlights urgent research, and stresses the need for compassion in treating both PAH and addiction.
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.
Finding Strength She Never Knew She Had: Living Fully With PH
I’m Aware That I’m Rare: the phaware® podcast
Episode 503 - Jennifer Howard
Jennifer Howard’s inspiring story is one of resilience and hope in the face of immense challenges. Diagnosed with idiopathic pulmonary arterial hypertension (IPAH) in July 2019 after a long and frustrating path to answers, Jennifer faced the daunting reality of living with a chronic illness requiring continuous IV medication through a pump. Despite the overwhelming nature of her diagnosis, Jennifer discovered an inner strength she never knew she had. With a focus on living life to the fullest, she learned to navigate both the bad days and the good, embracing moments that brought her happiness and refusing to let despair take root.
Living Boldly With PH: The Power of Self-Advocacy
I’m Aware That I’m Rare: the phaware® podcast
Episode 502 - Kaitlyn Salongo
Kaitlyn Salonga shares her journey of resilience and advocacy while living with pulmonary hypertension (PH). Kaitlyn recounts her fight for personal autonomy, including a successful battle to secure surgery for her reproductive health after initial denials due to weight and health concerns. Through her triumphs, she highlights the importance of advocating for oneself in the face of medical and societal challenges. Her story is a powerful testament to embracing one’s identity, breaking down stigma, and showing that life with PH can be fulfilling and bold.