«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.

«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.

«Soy consciente de que soy única»: el podcast de phaware® «
», episodio 577 — Carla Kinsey

Antes de Zoom, antes de los grupos de Facebook, Carla Kinsey, paciente de hipertensión pulmonar, solo contaba con una voz al otro lado del teléfono. Esa soledad la empujó a dar un paso aterrador: crear ella misma un grupo de apoyo. Lo que comenzó como una necesidad de conexión se convirtió en un salvavidas para innumerables pacientes que se enfrentan a enfermedades raras.

«Soy consciente de que soy única»: el podcast de phaware® «
», episodio 576 — Karen Sawyer

La hipertensión pulmonar estuvo a punto de arrebatarle a Karen Sawyer su identidad. Sin embargo, Karen la reconstruyó a través de la defensa de la causa, la educación y las relaciones humanas, demostrando que nadie debería afrontar una enfermedad rara en soledad.

«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.

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.

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.

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.

I’m Aware That I’m Rare: the phaware® podcast
Episode 570 - Terrie Keplinger

Terri Keplinger went from healthy and unstoppable to fighting for breath after unexplained swelling and a shocking ER visit led to a pulmonary arterial hypertension diagnosis. In this episode, she shares how denial turned into purpose, and how she transformed her fight into advocacy, support, and a mission to help others get diagnosed before it’s too late.

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.

I’m Aware That I’m Rare: the phaware® podcast
Episode 568 - Sherry Rouse

At 30, Sherry Rouse went in for a breast cancer screening. What doctors found instead wasn’t cancer, but was something far rarer, and potentially fatal: idiopathic pulmonary arterial hypertension Sherry recounts the emotional rollercoaster of being blindsided by a rare illness and how she turned that chaos into advocacy and hope.

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.

I’m Aware That I’m Rare: the phaware® podcast
Episode 513 - Kristin Highland, MD

Kristin Highland, MD, from the Cleveland Clinic discusses the importance of shared decision-making and patient preferences when treating patients with pulmonary hypertension. Dr. Highland, emphasizes that the patient is the true expert on their own body and that it is crucial to understand their perspective when making treatment decisions. She highlights the need to consider factors beyond just clinical outcomes, such as side effects, costs, and the patient’s ability to manage the therapy. She underscores the evolving role of patient-reported outcomes in medical decision-making and the need for open communication between providers and patients to ensure individualized and preference-aligned care.

I’m Aware That I’m Rare: the phaware® podcast
Episode 512 - Jimmy Ford, MD

Jimmy Ford, MD discusses the 7th World Symposium on Pulmonary Hypertension and his work on the Exploring the Patient Perspective in PH Task Force.

I’m Aware That I’m Rare: the phaware® podcast
Episode 510 - Drs. Kevin and Heather Shannon

Co-Founder and Board Member, Drs. Kevin and Heather Shannon share the inspiring story of Camp del Corazon - a transformative summer camp for children with heart disease. Hear how one patient’s journey ignited a movement to create a safe, empowering space where kids can embrace their scars, form lifelong friendships, and experience the joy of camp without limits.

From the challenges of the first year to the life-changing moments that keep them going, the Shannons share how Camp del Corazon has touched countless lives and redefined what it means to live fully with a medical condition. #campdelcorazon #heartcamp #camplove

I’m Aware That I’m Rare: the phaware® podcast
Episode 509 - Jen Cueva

Jen Cueva, a pulmonary hypertension patient of almost two decades, discusses her diagnosis, her advocacy work, and how she uses writing to support the pulmonary hypertension community.

I’m Aware That I’m Rare: the phaware® podcast
Episode 507 - Jolie Lizana

Jolie Lizana is a pulmonary hypertension (PH) survivor and advocate. Despite enduring severe heart failure and lengthy hospitalizations, Jolie credits her medical background, determination, and the love for her child for pushing her to survive and adapt. Jolie now raises awareness through her website, www.breathtakingawareness.com, and has contributed to creating EMS protocols for PH patients, showing her dedication to empowering others with hope and resources.