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
Episodes
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
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 t...
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 prev...
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 ...
How Stigma Blocks Meth-PAH Treatm...
The Hidden Epidemic: Meth and PH
Meth-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...
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.
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 r...
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...
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.
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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.
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 chal...
In this episode, Drs. Victor Test, Deborah Levine and Rodolfo Estrada discuss CHEST's First 5 Minutes® program, which helps medical professionals build the ski...
Dr. Tijana Milinic and Lia Barros, DNP, from the University of Washington take a deep dive into the world of pulmonary arterial hypertension (PAH) clinical trials and discuss why diversity and inclusion matter. They explore the hidden biases in medical research and the real-world consequences of exclusion.
Dr. Lana Melendres-Groves dives into her research on racial and ethnic disparities in PAH treatment. From differences in medication access to the role of social determinants of health, she explores how systemic barriers impact care and what steps can be taken to ensure equity and incl...
Dr. Roham Zamanian, discusses the concept of "disease modification" in the treatment of pulmonary hypertension. He describes how this idea emerged from discussions with colleagues about the future of pulmonary hypertension therapies, and the potential for treatments to impact the...
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 Tsch...
Why Pulmonary Hypertension Isn't Just a Lung Problem
Cardiologist Dr. Lisa Mielniczuk from the Mayo Clinic pulls back the curtain on one of the most common — yet misunderstood — forms of pulmonary hypertension: the kind caused by left heart disease. In this episode, she e...
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