I'm Aware That I'm Rare: the phaware® podcast podcast artwork

PODCAST · health

I'm Aware That I'm Rare: the phaware® podcast

I'm Aware That I'm Rare: the phaware® podcast is devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death. Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease. Learn more about PH at www.phaware.global

  1. 1000

    Episode 580 - Evan Holm, LMSW, SWCM

    Why a Social Worker Might Be the Most Important Person on a PH Care Team When pulmonary hypertension finally gets a name, fear rushes in fast. Social Worker, Evan Holm, is often the first person patients lean on after their right heart catheterization at University of New Mexico Hospital. As a support group leader for PAH, he is passionate about providing emotional and educational support to patients and their families while assisting them in navigating the healthcare system. His work proves that access, advocacy, and compassion can be just as lifesaving as medication. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @UNMHSC

  2. 999

    Episode 579 - Laura Camponeschi

    Who Cares for the Caregiver When Everyone Else Comes First? Behind every pulmonary hypertension patient is someone quietly running on empty. Laura Camponeschi pulls back the curtain on caregiver burnout—the emotional, mental, and physical toll that builds when someone is "always on" and never feels safe stepping away. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. 

  3. 998

    Episode 578 - Dawn Ogden

    Three Generations. One Gene. A Rare Disease She Couldn't Outrun. Dawn Ogden has lived her entire adult life under the shadow of pulmonary hypertension. After losing her sister and watching her father battle the disease, Dawn learned it was genetic—and that she carried it. What followed was a lifetime of testing, fear, and impossible choices as she faced the reality that the same gene could shape her children's futures. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. 

  4. 997

    Episode 577 - Carla Kinsey

    She Went Looking for Answers and Ended Up Building a Lifeline Before Zoom, before Facebook groups, pulmonary hypertension patient, Carla Kinsey, had only a voice on a phone line. That loneliness pushed her to do something terrifying: start a support group herself. What began as a need for connection became a lifeline for countless patients navigating rare disease. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com.

  5. 996

    Episode 576 - Karen Sawyer

    PH Tried to Isolate Her. She Turned Loneliness into a Lifeline for Others Pulmonary hypertension nearly stole Karen Sawyer's sense of self. Instead, Karen rebuilt it through advocacy, education, and human connection, proving that no one should face a rare disease alone. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com.

  6. 995

    Episode 575 - Carol Stokley

    A Silent Blood Clot, a 10-Hour Surgery, and a Second Chance at Life Canadian CTEPH patient, Carol Stokley was healthy, active, and unstoppable, until the day she couldn't breathe. After months of being told nothing was wrong, she collapsed into ICU with life-threatening clots in her lungs. Hear how a once-in-a-lifetime surgery gave her breath, strength, and life back. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @phacanada #CTEPH  

  7. 994

    Episode 574 - Jenny Yang, MD

    From "Untreatable" to Life-Changing: The New Era of CTEPH Care What happens when patients are told everything looks "normal" but they still can't breathe? Dr. Jenny Yang explains how new testing and team-based care are solving one of pulmonary medicine's most overlooked mysteries and changing what's possible for CTEPH patients. This Special Edition episode is sponsored by Liquidia. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. #phawareMD @UCSDHealth #CTEPH @JennyYangMD  

  8. 993

    Episode 573 - Eric Borstein

    Why "The Walking Guy" Trusts His Therapist as Much as His Cardiologist 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. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @teamphhope @where_is_eb 

  9. 992

    Episode 572 - Nicole Dempsey

    Don't Let PH Ground You: A Real-World PH Travel Playbook 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. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @phacanada 

  10. 991

    Episode 571 - Florin Dumitrescu

    He Sent 100 Emails to Save His Wife… Only 3 Doctors Answered 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. #WorldPHDay2026 Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @EuropePHA  

  11. 990

    Episode 570 - Terrie Keplinger

    She'd Never Been Sick - Until a Rare Disease Hit Like a Brick Wall 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. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com.

  12. 989

    Episode 569 - Rey Adam Rodriguez

    From Newlywed to Newly Diagnosed 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. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com.

  13. 988

    Episode 568 - Sherry Rouse

    She Was Prepared for Breast Cancer Not for a Rare, Incurable Disease 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. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com.  

  14. 987

    Episode 567 - Dr. Nicholas Kolaitis

    The Insurance Plan You Never Knew You Needed 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. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. #phawareMD @UCSFHospitals

  15. 986

    Episode 566 - Lala Juarez

    The Most Dangerous Phrase in Rare Disease: "You Look Fine." 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. Her story is one of preparation, advocacy, resilience, and learning that healing doesn't mean going back to who you were, but becoming someone more present, empathetic, and aware that rare doesn't mean invisible. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com.

  16. 985

    Episode 565 - Angela Brown

    The Daily Discipline of PH: Living by the Liter and Label 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. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @phacanada

  17. 984

    Episode 564 - Neal McDermott and Steve Mathai, MD

    Two Rare Diagnoses, One Powerful Partnership 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. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware #phawareMD Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @HopkinsMedicine

  18. 983

    Episode 563 - Khushboo Goel, MD

    The Hidden Daily Battles of Pulmonary Hypertension Patients Behind the clinical charts and heart catheterizations lies a world of emotional, financial, and physical challenges that PH patients face every day. Dr. Khushboo Goel opens up about what she's learned from patients in support groups—and how it's reshaping her approach to care. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware #phawareMD Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @CedarsSinai

  19. 982

    Episode 562 - Ripla Arora, PhD

    Why the Clues to Pulmonary Hypertension Start Before Birth When Ripla Arora first studied TBX4 as a young PhD student, no one imagined this gene held secrets to life-threatening lung diseases. Now, years later, her early work is the foundation of a global effort to unlock the fetal origins of pulmonary hypertension. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware #phawareMD Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @TBX4_Life @PHatStanford @michiganstateu  

  20. 981

    Episode 561 - Jeffrey Whitsett, MD

    Cracking the Code: How Genetics Is Rewriting Neonatal Medicine Dr. Jeffrey Whitsett reflects on five decades in neonatal care, tracing the evolution from limited support for preemies to today's cutting-edge genetic discoveries. Discover how rare gene mutations like TBX4 are reshaping our understanding of lung development and why collaboration with families is key to the next era of life-saving treatments. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware #phawareMD Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @TBX4_Life 

  21. 980

    Episode 560 - Luke Stockdale

    From Knee Pain to Gene Discovery: One Family's Unexpected Diagnosis 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. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @TBX4_Life     

  22. 979

    Episode 559 - Drs. Matina Prapa and Olivier Danhaive

    How a Global Team Is Rewriting the TBX4 Playbook Rare diseases thrive in isolation. TBX4Life is changing that. In this episode, Drs. Prapa and Danhaive share how international collaboration is creating real-time change for patients. From newborn screening to natural history studies to rethinking how we talk about genetic testing, they're helping create a roadmap to a cure.  Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware #phawareMD Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @TBX4_Life

  23. 978

    Episode 558 - Anton Morkin

    One Dad's Mission to Cure His Son's Genetic Disease When Anton Morkin's son was diagnosed with "idiopathic" pulmonary hypertension, he refused to accept "no known cause" as an answer. What followed was a crash course in genetics, the discovery of a rare mutation, and the formation of a worldwide coalition, TBX4Life. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @TBX4_Life

  24. 977

    Episode 557 - Gaurav Choudhary, MD

    How an AI Stethoscope Could Transform Global Healthcare What if diagnosing PH didn't require an echo or heart catheterization—but just a AI powered stethoscope? Dr. Gaurav Choudhary talks real-world use cases, validation studies, and the global potential of portable, AI-powered diagnostics in under-resourced settings. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware #phawareMD Share your story: [email protected] @BrownMedicine

  25. 976

    Episode 556 - Lenise Whitley

    The Loneliness of Pulmonary Hypertension 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. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @teamphhope  

  26. 975

    Episode 555 - Nicole Fitzgerald

    One Teacher's Unexpected Battle with a Silent Killer 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. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. 

  27. 974

    Episode 554 - Jean Elwing, MD

    Telehealth Is Ending: What That Means for PH Patients Telehealth use surged during COVID, but what happens next? Dr. Jean Elwing discusses the rapid expansion of telemedicine in pulmonary hypertension, the upcoming expiration of COVID-era telehealth funding in 2026, and why licensure and reimbursement policies could dramatically affect patient care. This episode highlights what's at stake for rare disease patients and why advocacy and awareness are essential to sustaining virtual care options. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. #phawareMD @uc_health @ElwingJean @accpchest

  28. 973

    Episode 553 - Jasmine Wells

    You Can Grieve and Still Fight: Love, Loss, and Living with PAH 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. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com.   

  29. 972

    Episode 552 - Kevin Allen

    The Pulse of a Fighter: Survival, Stigma, and Shaking Up HealthcareThey 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. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] 

  30. 971

    Episode 551 - Russel Hirsch, MD

    Why Families Belong at the Table: PHriends of the PPHNet Dr. Russel Hirsch breaks down the core pillars of the PPHNet, from shared research to consistent care standards, and explains why the next chapter in pediatric pulmonary hypertension care must be written with families, not just for them through the PHriends family-led committee. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] #phawareMD #PPHNet @PPHNet @CincyChildrens

  31. 970

    Episode 550 - Jennifer Keeley, DPN and Mary Whittenhall, MSN

    Jennifer Keeley and Mary Whittenhall, experienced nurse practitioners in the field of pulmonary hypertension, discuss the management of cough in patients receiving inhaled therapies for pulmonary hypertension and interstitial lung disease. #GossamerBioPartner #sponsored This Special Edition episode is sponsored by Gossamer Bio. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. #phawareMD #PHILD @GossamerBio @AHNtoday 

  32. 969

    Episode 549 - Ashlee Gambino

    FIGHTER TO SURVIVOR: ASHLEE GAMBINO'S BATTLE BEYOND THE RING 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. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] @teamphhope 

  33. 968

    Episode 548 - Sophia Esteves

    Scars and Survival: Rebuilding Life After a Devastating Diagnosis 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. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] 

  34. 967

    Episode 547 - Richard Channick, MD

    The Silent Rise of Chronic Pulmonary Embolism and the Tech That's Changing Everything From portable ECMO to catheter breakthroughs, the treatment of pulmonary embolism has come a long way. Dr. Richard Channick takes us behind the scenes of cutting-edge interventions and shares the empowering truth: even community hospitals now have lifelines to expert centers. The care you need might be closer than you think. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] #phawareMD #CTEPH @rchannick @UCLAHealth  

  35. 966

    Episode 546 - Jenny Yang, MD

    The One Type of PH You Can Actually Cure Dr. Jenny Yang dives into the rare but life-changing world of CTEPH, the only form of pulmonary hypertension that may be curable. From early warning signs to surgical options, this episode explains why ruling out CTEPH should be step one for any PH diagnosis. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] #phawareMD @UCSDHealth #CTEPH @JennyYangMD

  36. 965

    Episode 545 - Victor Test, MD

    The Diagnosis Delay That's Still Hurting Patients Despite better tools and more awareness, people with PH are still being diagnosed too late. Dr. Victor Test opens up about the biggest barrier in PH today: getting diagnosed on time. Learn why shortness of breath is often dismissed—and how both patients and doctors can work together to catch pulmonary hypertension earlier. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. #phawareMD @accpchest @redraiderpulmcc  

  37. 964

    Episode 544 - LaRae Hacker

    How TBX4Life Is Fueling a Global Collaboration LaRae Hacker never set out to become a rare disease advocate—but when her daughter's TBX4 diagnosis left her feeling helpless, she found power in connection. Discover how TBX4Life became her anchor in uncertainty and why she believes parent-led advocacy is the key to progress in rare disease research. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] @TBX4_Life

  38. 963

    Episode 543 - Anthony Carrasco

    How I Survived Meth Addiction, Lung Failure, and Found Purpose 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. This Special Edition Episode Sponsored by: Johnson & Johnson Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] @JNJInnovMed

  39. 962

    Episode 542 - Brandon Jakubowski, MD

    Treating Meth-Associated PAH Without Judgment 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. This Special Edition Episode Sponsored by:  Johnson & Johnson Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] #phawareMD @JNJInnovMed @UTSWMedCenter

  40. 961

    Episode 541 - Nicholas Kolaitis, MD

    The Face of Addiction Isn't Who You Think It Is 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. This Special Edition Episode Sponsored by: Johnson & Johnson Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] @JNJInnovMed #PHawareMD @UCSFHospitals @LungTxptMD

  41. 960

    Episode 540 - Peter J. Leary, MD

    How Stigma Blocks Meth-PAH Treatment and How to Stop It 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. This Special Edition Episode Sponsored by: Johnson & Johnson Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] #phawareMD @uwepidemiology  @JNJInnovMed

  42. 959

    Episode 539 - Vinicio de Jesus Perez, MD

    The Hidden Epidemic: Meth and PHMeth-Associated PAH is on the rise across the United States, yet many patients are not receiving the treatment they need. Dr. Vinicio de Jesus Perez discusses the shifting demographics of meth users, the challenges of treating addiction in cardiopulmonary care, and the need for compassionate, stigma-free screening. This Special Edition Episode Sponsored by: Johnson & Johnson Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] #phawareMD @PHatStanford  @Viniciodjperez  @JNJInnovMed

  43. 958

    Episode 538 - John Kingrey, MD

    Dr. John Kingrey exposes the rising crisis of meth-associated 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. This Special Edition Episode Sponsored by: Johnson & Johnson Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @integrishealth @teamphhope @JNJInnovMed #phawareMD

  44. 957

    Episode 537 - Kari Gillmeyer, MD, MSC

    Delays in diagnosing and treating pulmonary hypertension (PH) can have life-altering consequences. In this episode, Dr. Kari Gillmeyer, discusses her groundbreaking study on PH care networks. She explores why so many patients experience delays, how geography and provider access play a role, and what can be done to improve timeliness of care. This Special Edition Episode Sponsored by: Johnson & Johnson Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @VABostonHC @The_BMC @JNJInnovMed

  45. 956

    Episode 536 - Eric Borstein

    A 200 Mile Journey from LA to San Diego to Raise Awareness for PH 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. Learn more about the 2nd Annual Where is EB? 5K Walk and Fundraiser September 7, 2025 Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware  Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] @teamphhope  @where_is_eb @DJLisaFoxx  

  46. 955

    Episode 535 - Akshay Muralidhar, MD

    In this episode, Dr. Akshay Muralidhar, Co-Director of the Pulmonary Hypertension Center of Excellence at Arizona Pulmonary Specialist in Phoenix, discusses the importance of having a specialized center for pulmonary hypertension. Dr. Muralidhar also highlights the challenges of managing patients with substance abuse issues, particularly methamphetamine use. Dr. Muralidhar emphasizes the importance of access to care, particularly for underserved communities, and the need for outreach programs to ensure that all patients have access to treatment options.  This Special Edition Episode Sponsored by: Johnson & Johnson Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] #phawareMD @JNJInnovMed

  47. 954

    Episode 534 - Raj Parikh, MD, MPH

    Dr. Raj Parikh from Hartford Hospital discusses building on foundational pathways with treatment options for Pulmonary Arterial Hypertension (PAH) patients. He also emphasizes the value of clinical trials as well as the importance of a good doctor/patient relationship.  This Special Edition Episode Sponsored by: Johnson & Johnson Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. #phawareMD @HartfordHealthC @JNJInnovMed

  48. 953

    Episode 533 - Robert Frantz, MD

    Dr. Robert Frantz breaks down the key metrics behind risk stratification—functional class, six-minute walk distance, and brain natriuretic peptide levels—and explains how they shape treatment plans. He also explores the role of echocardiography, right heart catheterization, and cutting-edge therapies in improving patient outcomes. Read the proceedings of the Task Force on Risk Stratification from the Seventh World Symposium on Pulmonary Hypertension.  This Special Edition Episode Sponsored by: Johnson & Johnson Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] #phawareMD #RiskStratification @MayoClinic @MayoMedEd @TeamPHHope @JNJInnovMed

  49. 952

    Episode 532 - Jean M Elwing, MD

    ICU & You: What Happens When Pulmonary Hypertension Turns Critical? Pulmonary hypertension is already a complex condition, but what happens when it becomes life-threatening? Dr. Jean Elwing breaks down what patients and families can expect when someone with PH ends up in the ICU. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. #phawareMD @uc_health @ElwingJean @accpchest 

  50. 951

    Episode 531 - John Granton, MD

    Dr. John Granton, a critical care and transplant physician at Toronto General Hospital, shares his journey in pulmonary hypertension and lung transplantation, detailing the groundbreaking advancements in transplant technology. He discusses the evolution of lung preservation methods, the challenges of chronic rejection, and the hope for longer-lasting transplants. With a passion for improving patient outcomes, Dr. Granton envisions a future where transplant becomes obsolete—replaced by treatments that cure underlying diseases. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @UHN @teamphhope #phawareMD #PHILD #transplant @phacanada

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ABOUT THIS SHOW

I'm Aware That I'm Rare: the phaware® podcast is devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death. Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease. Learn more about PH at www.phaware.global

HOSTED BY

phaware global association

CATEGORIES

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What is I'm Aware That I'm Rare: the phaware® podcast about?

I'm Aware That I'm Rare: the phaware® podcast is devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. Through this series of impactful, insightful and, most importantly, hopeful stories from...

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I'm Aware That I'm Rare: the phaware® podcast has 50 episodes. Check the episode list to see recent publication dates and frequency.

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