PODCAST

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

health & fitness medicine

All Episodes

Lynette Chambers - phaware® interview 494

I"m Aware That I"m Rare: the phaware® podcast ·

2024/11/12

Lynette Chambers, a 9-year PAH (pulmonary arterial hypertension) patient, has also been diagnosed with pulmonary fibrosis (PF). She shares her journey, from struggling with daily activities to being admitted to the hospital with severely low oxygen levels. Lynette discusses the emotional challenges of facing a terminal illness and the difficulty of balancing work and family time. Despite the hard reality, Lynette emphasizes the importance of gratitude, making others feel better, and being the

11:14

Episode 494 - Lynette Chambers

I"m Aware That I"m Rare: the phaware® podcast ·

2024/11/11

John Kingrey, MD and Nicole Fitzgerald - phaware®...

I"m Aware That I"m Rare: the phaware® podcast ·

2024/11/05

John Kingrey, MD, Director of the INTEGRIS Pulmonary Hypertension (PH) Center of Oklahoma and PH patient, Nicole Fitzgerald, discuss the importance of the physician-patient relationship as it relates to participation in clinical trials including the Phase 2 TORREY Study (now the Phase 3 PROSERA Study). #GossamerBioPartner #sponsored John Kingrey, MD: My name is John Kingrey. I’m the director of the Pulmonary Hypertension Center at INTEGRIS Health. I’m a pulmonologist in pulmonary hypertension in

25:06

Episode 493 - John Kingrey, MD and Nicole Fitzgerald

I"m Aware That I"m Rare: the phaware® podcast ·

2024/11/04

John Kingrey, MD, Director of the @integrishealth Pulmonary Hypertension (PH) Center of Oklahoma and PH patient, Nicole Fitzgerald, discuss the importance of the physician-patient relationship as it relates to participation in clinical trials including the Phase 2 TORREY Study (now the Phase 3 PROSERA Study). #GossamerBioPartner #sponsored Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story:

Kathy Downey - phaware® interview 492

I"m Aware That I"m Rare: the phaware® podcast ·

2024/10/29

Canadian patient, Kathy Downey, recounts her four-and-a-half-year journey with pulmonary hypertension (PH). Kathy shares the challenges of living with the condition, including reliance on high-flow oxygen and the emotional toll it has taken. Despite these obstacles, she has become a passionate advocate, educating others about PH and serving as an ambassador for PHA Canada. Throughout, Kathy highlights the crucial support from her husband and the difficulties caregivers face. My name is Kathy

14:55

Episode 492 - Kathy Downey

I"m Aware That I"m Rare: the phaware® podcast ·

2024/10/28

Sarah Stone - phaware® interview 491

I"m Aware That I"m Rare: the phaware® podcast ·

2024/10/22

Sarah Stone shares the story of her family's journey with rare medical conditions in North Central Minnesota. Sarah's life took a turn when her daughter began showing unusual symptoms, eventually diagnosed with pulmonary hypertension, a rare condition complicated by her family's genetic predisposition to HHT. As their medical challenges unfolded with two of her three children facing life-threatening conditions, Sarah discusses the trials of managing these complex issues while living in a remote

21:26

Episode 491 - Sarah Stone

I"m Aware That I"m Rare: the phaware® podcast ·

2024/10/21

Maria Morais - phaware® interview 490

I"m Aware That I"m Rare: the phaware® podcast ·

2024/10/15

Maria Morias, a registered nurse from Canada, shares her journey of managing multiple autoimmune diseases, including her recent diagnosis of pulmonary arterial hypertension. Previously dealing with scleroderma, Raynaud's phenomenon, and a rare liver disease leading to a liver transplant, Maria's ongoing symptoms of shortness of breath were eventually linked to pulmonary hypertension. Her story reflects on the psychological impact of chronic illness and the empowerment gained from community support

13:23

Episode 490 - Maria Morais

I"m Aware That I"m Rare: the phaware® podcast ·

2024/10/14

David Lake - phaware® interview 489

I"m Aware That I"m Rare: the phaware® podcast ·

2024/10/08

David Lake a retired jet pilot, discusses his experience with pulmonary arterial hypertension, initially misdiagnosed as exercise-induced asthma. Lake also manages hemophilia, COPD, and irregular heartbeats, impacting his health significantly. Despite these challenges, he remains hopeful and active in his community and church. His story is a testament to resilience and the quest for better treatment through clinical trials. My name is David Lake. I am from Oakley, Utah, which is a little community

10:33

Episode 489 - David Lake

I"m Aware That I"m Rare: the phaware® podcast ·

2024/10/07

In this episode, David Lake a retired jet pilot, discusses his experience with pulmonary arterial hypertension, initially misdiagnosed as exercise-induced asthma. Lake also manages hemophilia, COPD, and irregular heartbeats, impacting his health significantly. Despite these challenges, he remains hopeful and active in his community and church. His story is a testament to resilience and the quest for better treatment through clinical trials. Learn more about pulmonary hypertension trials at

Lori Myers - phaware® interview 488

I"m Aware That I"m Rare: the phaware® podcast ·

2024/10/01

Lori Myers, shares her experience living with VSD and Tetralogy of Fallot, which caused her to be born as a "blue baby" and have various health issues throughout her life. After multiple surgeries and diagnoses, she was eventually told she had pulmonary arterial hypertension (PAH). Despite the prognosis, Lori is now in her tenth year since the diagnosis. She emphasizes the importance of listening to one's own body and following medical advice. Lori finds strength in her family, particularly her

05:27

Episode 488 - Lori Myers

I"m Aware That I"m Rare: the phaware® podcast ·

2024/09/30

Sue Liss - phaware® interview 487

I"m Aware That I"m Rare: the phaware® podcast ·

2024/09/24

PAH 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. I'm Sue Liss. I was diagnosed with pulmonary arterial hypertension in 2007 when I was

12:19

Episode 487 - Sue Liss

I"m Aware That I"m Rare: the phaware® podcast ·

2024/09/23

PAH 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

Scott E. Olitsky, MD - phaware® interview 486

I"m Aware That I"m Rare: the phaware® podcast ·

2024/09/17

In this episode, Dr. Scott Olitsky, the Global Center of Excellence Outreach Director for Cure HHT, discusses hereditary hemorrhagic telangiectasia (HHT), a genetic disease characterized by abnormal blood vessel development. HHT can cause bleeding in various parts of the body, with nosebleeds being the most common symptom. In some cases, HHT can lead to the development of pulmonary arterial hypertension (PAH). Medications that dilate blood vessels can worsen bleeding in HHT patients. Dr. Olitsky

08:51

Episode 486 - Scott E. Olitsky, MD

I"m Aware That I"m Rare: the phaware® podcast ·

2024/09/16

Eric Borstein - phaware® interview 485

I"m Aware That I"m Rare: the phaware® podcast ·

2024/09/10

Eric Borstein, who lives with pulmonary arterial hypertension, is walking from Los Angeles to San Diego to raise funds and awareness for the benefit of Team PHenomenal Hope. On September 21st, 2020, while at home, he collapsed from massive right heart failure and almost died. On September 22nd, 2024, four years after his PH diagnosis, he begin his 120+ mile walk for patients living with pulmonary hypertension. Learn more about his journey and this amazing event at WhereIsEB.og. My name is Eric

11:10

Episode 485 - Eric Borstein

I"m Aware That I"m Rare: the phaware® podcast ·

2024/09/09

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

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