Lala Juarez - phaware® interview 566
I'm Aware That I'm Rare: the phaware® podcast
The Most Dangerous Phrase in Rare Disease: “You Look Fine.” My name is Lala Juarez. I am a support group leader for Northern Utah. I’m also a patient. I was diagnosed with idiopathic pulmonary arterial hypertension in 2015. I had two years of being undiagnosed through, as a lot of patients know, like asthma, whooping cough, allergies. I went through oral medications. I tried the Sub-Q and we were not friends. It didn't work out. So I went to IV therapy. I had that for about two years. I had a double lung transplant consultation. The first one I took super seriously. I brought my best...
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Episode 566 - Lala Juarez
I'm Aware That I'm Rare: the phaware® podcast
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...
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Angela Brown - phaware® interview 565
I'm Aware That I'm Rare: the phaware® podcast
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. My name is Angela Brown. I live in Toronto, Canada. In April of 2024, I was diagnosed with pulmonary hypertension. It started towards the end of 2022. I wasn't feeling well. My legs would swell up and I would have problems walking and...
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Episode 565 - Angela Brown
I'm Aware That I'm Rare: the phaware® podcast
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 . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: .
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Neal McDermott and Steve Mathai, MD - phaware® interview 564
I'm Aware That I'm Rare: the phaware® podcast
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. Neal McDermott: My name is Neal McDermott. I live in the mountains in West Virginia. I was originally diagnosed with pulmonary arterial hypertension in December of 2016. Prior to that, I...
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Episode 564 - Neal McDermott and Steve Mathai, MD
I'm Aware That I'm Rare: the phaware® podcast
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 . Follow us on social @phaware Engage for a cure: #phaware #phawareMD Share your story: Like, Subscribe and Follow us: ...
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Khushboo Goel, MD phaware® interview 563
I'm Aware That I'm Rare: the phaware® podcast
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. My name is Dr. Khushboo Goel. I am a pulmonary hypertension specialist here at Cedars-Sinai. I'm part of the faculty for the Division of Pulmonary and Critical Care Medicine. I came to Cedars in route, multiple states in terms of my medical training....
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Episode 563 - Khushboo Goel, MD
I'm Aware That I'm Rare: the phaware® podcast
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 . Follow us on social @phaware Engage for a cure: #phaware #phawareMD Share your story: Like, Subscribe and Follow us: .
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Ripla Arora, PhD - phaware® interview 562
I'm Aware That I'm Rare: the phaware® podcast
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. My name is Ripla Arora and I’m an Associate Professor in the OB-GYN department and the biomedical engineering department at Michigan State University. I also am part of the Institute of Quantitative Health Science and Engineering. I’m a developmental biologist and a geneticist...
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Episode 562 - Ripla Arora, PhD
I'm Aware That I'm Rare: the phaware® podcast
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 . Follow us on social @phaware Engage for a cure: #phaware #phawareMD Share your story: Like, Subscribe and Follow us: .
info_outlinePAH patient and Chicago-area support group leader, Sue Liss, discusses her pulmonary arterial hypertension diagnosis. Sue is involved with multiple PH related advocacy groups. Through these groups, she offers support and guidance, particularly in navigating medication funding challenges and accessing the right care, emphasizing the importance of community and shared experiences in managing this rare disease.
Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware
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Share your story: info@phaware.com