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

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: info@phaware.global 

12-30
13:16

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: info@phaware.global 

12-23
27:12

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: info@phaware.com #phawareMD #PPHNet @PPHNet @CincyChildrens

12-16
10:27

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: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com. #phawareMD #PHILD @GossamerBio @AHNtoday 

12-09
29:41

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: info@phaware.com @teamphhope 

12-01
12:24

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: info@phaware.com 

11-25
13:05

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: info@phaware.com #phawareMD #CTEPH @rchannick @UCLAHealth  

11-18
08:22

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: info@phaware.com #phawareMD @UCSDHealth #CTEPH @JennyYangMD

11-11
13:10

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: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com. #phawareMD @accpchest @redraiderpulmcc  

11-04
05:58

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: info@phaware.com @TBX4_Life

10-28
09:05

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: info@phaware.com @JNJInnovMed

10-21
15:28

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: info@phaware.com #phawareMD @JNJInnovMed @UTSWMedCenter

10-14
11:57

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: info@phaware.com @JNJInnovMed #PHawareMD @UCSFHospitals @LungTxptMD

10-07
14:45

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: info@phaware.com #phawareMD @uwepidemiology  @JNJInnovMed

09-30
18:27

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: info@phaware.com #phawareMD @PHatStanford  @Viniciodjperez  @JNJInnovMed

09-23
21:18

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: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com. @integrishealth @teamphhope @JNJInnovMed #phawareMD

09-16
15:45

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: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com. @VABostonHC @The_BMC @JNJInnovMed

09-09
13:08

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: info@phaware.com @teamphhope  @where_is_eb @DJLisaFoxx  

09-02
23:26

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: info@phaware.com #phawareMD @JNJInnovMed

08-26
13:52

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: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com. #phawareMD @HartfordHealthC @JNJInnovMed

08-19
14:46

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