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Episode 344 - Lindsey and Paige Doolan - Race Against PH

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

Release Date: 10/12/2020

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: ...

Thekla McGinley - phaware® interview 484

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

Thekla McGinley, a PAH patient and advocate, shares her journey with pulmonary arterial hypertension (PAH) and the changes she has witnessed in the treatment options and education for medical professionals. She emphasizes the importance of raising awareness and ensuring that patients have access to proper treatment. Thekla also discusses her role as a support group leader and encourages patients to communicate with their doctors to advocate for themselves in order to receive the best care. My name is Thekla McGinley, I’m from Bryant Arkansas. My connection to the PH community is I am a PAH...

Episode 484 - Thekla McGinley

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

In this episode, Thekla McGinley, a PAH patient and advocate, shares her journey with pulmonary arterial hypertension (PAH) and the changes she has witnessed in the treatment options and education for medical professionals. She emphasizes the importance of raising awareness and ensuring that patients have access to proper treatment. Thekla also discusses her role as a support group leader and encourages patients to communicate with their doctors to advocate for themselves in order to receive the best care. Learn more about pulmonary hypertension trials at . Follow us on social @phaware ...

More Episodes

Lindsey Doolan is a caregiver to her daughter, Paige, who is a pediatric pulmonary hypertension patient.

In this episode, they discuss Paige's PH diagnosis and the importance of the 20th Annual Virtual Race Against PH 5K/Fun Run, taking place at Stanford on November 1st, 2020 #raph20virtual

Register for the 20th Annual Race Against PH 5K: med.stanford.edu/raceagainstph

Enter this week's Time For Burpees! Contest (Oct 12-16)

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @PHatStanford

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