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Episode 445 - Angela Bates, MD

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

Release Date: 12/04/2023

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....

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:

Lori Myers - phaware® interview 488

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

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 grandchildren. My name is Lori Myers. I'm originally from Upstate New York, Adirondack Mountains. I...

Episode 488 - Lori Myers

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

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 grandchildren. Learn more about pulmonary hypertension trials at . Follow us on social...

Sue Liss - phaware® interview 487

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

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 living in Colorado. I am now living in Chicago. I had had cancer. I had a reaction to the...

Episode 487 - Sue Liss

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

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

Scott E. Olitsky, MD - phaware® interview 486

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

In this episode, Dr. Scott Olitsky, the Global Center of Excellence Outreach Director for , 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 shares his personal connection to HHT and PAH and highlights the efforts of Cure HHT to improve...

Episode 486 - Scott E. Olitsky, MD

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

Eric Borstein - phaware® interview 485

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

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 . My name is Eric Borstein. I'm from Brentwood, California, in Los Angeles. I was diagnosed with pulmonary...

Episode 485 - Eric Borstein

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

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

More Episodes

In this episode, Angela Bates, MD from Stollery Children’s Hospital, discusses the importance of incorporating quality of life into the management strategies for pediatric pulmonary hypertension patients.

Dr. Bates also talks about the importance of allowing patients to engage in activities they enjoy, even with limitations imposed by their condition, and the need for a multidisciplinary team to provide comprehensive 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: [email protected] #phawareMD @pphnet @PHACanada

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