She Was Prepared for Breast Cancer Not for a Rare, Incurable Disease
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.
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.
The Daily Discipline of PH: Living by the Liter and Label
I’m Aware That I’m Rare: the phaware® podcast
Episode 565 - Angela Brown
Most people don’t count every sip of water or every grain of salt. Angela Brown does. This episode dives into the daily discipline required to live with pulmonary hypertension — from navigating restaurant menus to surviving a exotic vacations in sweltering heat with strict fluid and sodium limits.
Two Rare Diagnoses, One Powerful Partnership
I’m Aware That I’m Rare: the phaware® podcast
Episode 564 - Neal McDermott and Steve Mathai, MD
Scleroderma and PAH: Patient, Neal McDermott and Dr. Steve Mathai unpack how the intersection of two rare diseases requires trust, early action, and deeply personalized care. This episode explores what happens when medical expertise meets patient resilience, and why collaboration and clinical trials matter more than ever in changing the outcomes of rare disease.
From Knee Pain to Gene Discovery: One Family’s Unexpected Diagnosis
I’m Aware That I’m Rare: the phaware® podcast
Episode 560 - Luke Stockdale
What started as routine investigations into hereditary knee problems turned into a life-altering discovery for Luke Stockdale and his family - a TBX4 gene mutation linked to pulmonary arterial hypertension (PAH). In this episode, Luke shares how his mother’s journey through years of respiratory care led to a rare diagnosis, and how it’s changed the course of his entire family’s future. With candor and urgency, he discusses the emotional weight of genetic testing, the inconsistencies in clinical care, and his mission to advocate for early detection and standardized monitoring.
The Loneliness of Pulmonary Hypertension
I’m Aware That I’m Rare: the phaware® podcast
Episode 556 - Lenise Whitley
After years of being dismissed, misdiagnosed, and told nothing was wrong, Lenise Whitley finally got an answer - pulmonary hypertension. In this powerful episode, she shares her journey through cardiac arrest, loss, faith, and isolation, and how support groups, advocacy, and self-belief helped her reclaim her voice. A raw, honest reminder of why being heard can be lifesaving.
One Teacher’s Unexpected Battle with a Silent Killer
I’m Aware That I’m Rare: the phaware® podcast
Episode 555 - Nicole Fitzgerald
Nicole Fitzgerald was a full-time special ed teacher juggling work, family, and a big move — until breathlessness and fatigue nearly took her life. What started as stress turned into a life-threatening diagnosis. This is the story of how she faced pulmonary hypertension head-on and redefined her purpose.
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.
How I Survived Meth Addiction, Lung Failure, and Found Purpose
I’m Aware That I’m Rare: the phaware® podcast
Episode 543 - Anthony Carrasco
Anthony Carrasco was a meth addict by 15, and nearly dead by 35. Diagnosed with PH after years of drug use, his story spiraled from homelessness to hospice. But a double lung transplant and a deep surrender to recovery transformed everything.
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.
7th WSPH Task Force 1:The Patient Perspective
I’m Aware That I’m Rare: the phaware® podcast
Episode 526 - Hall Skaara
Hall Skaara, representing PHA Europe, brought the patient perspective to the forefront at the World Symposium on Pulmonary Hypertension, joining other members of Task Force 1. PHA Europe was well-represented with delegates including Eva Otter, Monika Tschida, Natalia Maeva, Tadeja Ravnik, and Nina Kobler. This prestigious event gathered over 1,500 of the brightest minds in the field of pulmonary hypertension, offering a unique opportunity for patients and professionals to collaborate and share insights, as well as for patient associations to network.
Nearly 20 Years With PH: Finding Her Voice Through Advocacy and Writing
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.
From Senior Hockey to Everyday Survival: Living With CTEPH
I’m Aware That I’m Rare: the phaware® podcast
Episode 508 - Stephen Gariepy
Canadian resident, Stephen Gariepy, was diagnosed with Chronic Thromboembolic Pulmonary Hypertension (CTEPH) in 2018. After initially being active in senior hockey, his condition worsened, leading to difficulty breathing and performing daily tasks. Gariepy continues to live with this rare and terminal disease, adapting to the limitations it imposes on his daily life.
From Heart Failure to Hope: One Woman’s Fight to Survive PH
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.
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.
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.