23 años de supervivencia y sigo luchando contra la oscuridad que nadie ve.
«Soy consciente de que soy única»: el podcast de phaware® «
», episodio 591 — Jenn Lalonde
Sobrevivir a una enfermedad rara no siempre es heroico. A veces supone sufrir depresión, aislamiento y preguntarse si uno está «lo suficientemente enfermo» como para seguir mereciendo ese diagnóstico. Jenn Lalonde, una paciente canadiense con hipertensión pulmonar, lucha contra el síndrome del impostor en sus días buenos y contra una pesadez abrumadora en los malos. Porque, aunque el cuerpo se estabilice, la mente no siempre le sigue el ritmo.
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.
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.
Por qué un trabajador social podría ser la persona más importante del equipo de atención a la hipertensión pulmonar
«Soy consciente de que soy diferente»: el podcast de phaware® «
», episodio 580 — Evan Holm, LMSW, SWCM
Cuando la hipertensión pulmonar recibe por fin un nombre, el miedo se apodera rápidamente de uno. El trabajador social Evan Holm suele ser la primera persona en la que se apoyan los pacientes tras someterse a un cateterismo cardíaco derecho en el Hospital de la Universidad de Nuevo México. Como líder de un grupo de apoyo para la HAP, le apasiona brindar apoyo emocional y educativo a los pacientes y sus familias, al tiempo que les ayuda a orientarse en el sistema sanitario. Su trabajo demuestra que el acceso, la defensa de los derechos y la compasión pueden salvar vidas tanto como la medicación @UNMHSC
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.
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.
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.
From Blackout to Motherhood: One Woman’s Journey With PH
I’m Aware That I’m Rare: the phaware® podcast
Episode 506 - Allison Feenstra
Allison Feenstra shares her transformative journey from being an active, independent young woman to navigating life with pulmonary hypertension (PH). She recounts how a sudden blackout led to hospital visits and the discovery of the condition, stemming from complications related to prolonged bed rest and birth control medication. Allison candidly discusses how she underwent a significant surgery and persevered through a high-risk pregnancy, ultimately becoming a mother.
28 Years With PH: A Journey of Hope, Resilience and Progress
I’m Aware That I’m Rare: the phaware® podcast
Episode 505 - Jodi Berry
On the 28th anniversary of her PH diagnosis, Jodi Berry shares her journey of living with pulmonary hypertension. Despite facing an initial prognosis of only a few years to live, Jodi’s determination and the support of her family, friends, and healthcare professionals helped her manage her condition while maintaining an active lifestyle. Over time, advancements in treatments and her proactive participation in clinical trials provided hope and improved her quality of life.
More Than Medicine: Helping Children With PH Thrive
I’m Aware That I’m Rare: the phaware® podcast
Episode 504 - Janette Reyes, NP
Nurse Practitioner Janette Reyes from the Pulmonary Hypertension Program at the Hospital for Sick Children shares her extensive experience caring for pediatric patients with pulmonary hypertension. Reyes discusses the unique challenges and developmental considerations involved in treating children from infancy through their teenage years, as they transition to adulthood. Reyes also touches on the emotional and social struggles these young patients face, such as bullying and anxiety, and highlights the role of the multidisciplinary team in supporting their mental well-being.
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.