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Episode 487 - Sue Liss

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

Release Date: 09/23/2024

John Kingrey, MD and Nicole Fitzgerald - phaware® interview 493 show art John Kingrey, MD and Nicole Fitzgerald - phaware® interview 493

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

John Kingrey, MD, director of the 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 ). #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 Oklahoma City. I’ve been involved in pulmonary hypertension starting in the early part of my medical training,...

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Episode 493 - John Kingrey, MD and Nicole Fitzgerald show art Episode 493 - John Kingrey, MD and Nicole Fitzgerald

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

John Kingrey, MD, director of the 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 ). #GossamerBioPartner #sponsored Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: .

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Kathy Downey - phaware® interview 492 show art Kathy Downey - phaware® interview 492

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

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 Downey. I am from Calgary, Alberta. I have been a PH patient for four and a half years, and it's been...

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Episode 492 - Kathy Downey show art Episode 492 - Kathy Downey

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

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. Learn more about pulmonary hypertension trials at . Follow us on social @phaware  Engage for a cure: #phaware...

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Sarah Stone - phaware® interview 491 show art Sarah Stone - phaware® interview 491

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

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 area. She delves into the lessons learned, the importance of specialized medical care, and the...

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Episode 491 - Sarah Stone show art Episode 491 - Sarah Stone

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

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 area. She delves into the lessons learned, the importance of specialized medical care, and the...

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Maria Morais - phaware® interview 490 show art Maria Morais - phaware® interview 490

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

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 and self-advocacy. My name is Maria Morias and I live just outside of Toronto Ontario in Canada....

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Episode 490 - Maria Morais show art Episode 490 - Maria Morais

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

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 and self-advocacy. Learn more about pulmonary hypertension trials at . Follow us on social...

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David Lake - phaware® interview 489 show art David Lake - phaware® interview 489

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

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 just east of Park City at an elevation of 6,500 feet. I have pulmonary arterial hypertension....

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Episode 489 - David Lake show art Episode 489 - David Lake

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

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 . Follow us on social @phaware  Engage for a cure: #phaware Share your story:

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More Episodes

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 us on social @phaware 
Engage for a cure:
www.phaware.global/donate #phaware
Share your story:
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