Hap Farber, MD - phaware® interview 511
I'm Aware That I'm Rare: the phaware® podcast
Harrison "Hap" Farber, MD gives a recap of PHenomenal Hope 2024, emphasizing its patient-centered approach to pulmonary hypertension (PH) research. He highlights patient stories, particularly Eric Borstein's inspiring journey of recovery and advocacy, and underscores the importance of patient-provider collaboration. Additionally, he addresses challenges in PH care, such as inclusivity in clinical trials, the role of AI in medicine, and the complexities of treating patients with substance use disorders. I’m Hap Farber. I do pulmonary hypertension at TUFTS Medical Center in Boston. This is...
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Episode 511 - Hap Farber, MD
I'm Aware That I'm Rare: the phaware® podcast
Harrison "Hap" Farber, MD gives a recap of PHenomenal Hope 2024, emphasizing its patient-centered approach to pulmonary hypertension (PH) research. He highlights patient stories, particularly Eric Borstein's inspiring journey of recovery and advocacy, and underscores the importance of patient-provider collaboration. Additionally, he addresses challenges in PH care, such as inclusivity in clinical trials, the role of AI in medicine, and the complexities of treating patients with substance use disorders. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage...
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Drs. Kevin and Heather Shannon - phaware® interview 510
I'm Aware That I'm Rare: the phaware® podcast
Co-Founder and Board Member, Drs. Kevin and Heather Shannon share the inspiring story of — a transformative summer camp for children with heart disease. Hear how one patient’s journey ignited a movement to create a safe, empowering space where kids can embrace their scars, form lifelong friendships, and experience the joy of camp without limits. From the challenges of the first year to the life-changing moments that keep them going, the Shannons share how Camp del Corazon has touched countless lives and redefined what it means to live fully with a medical condition. The Shannon’s...
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Episode 510 - Drs. Kevin and Heather Shannon
I'm Aware That I'm Rare: the phaware® podcast
Co-Founder and Board Member, Drs. Kevin and Heather Shannon share the inspiring story of — a transformative summer camp for children with heart disease. Hear how one patient’s journey ignited a movement to create a safe, empowering space where kids can embrace their scars, form lifelong friendships, and experience the joy of camp without limits. From the challenges of the first year to the life-changing moments that keep them going, the Shannons share how Camp del Corazon has touched countless lives and redefined what it means to live fully with a medical condition. The Shannon’s...
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Jen Cueva - phaware® interview 509
I'm Aware That I'm Rare: the phaware® podcast
Jen Cueva, a pulmonary hypertension patient of almost two decades, discusses her diagnosis, her advocacy work, and how she uses writing to support the pulmonary hypertension community. My name is Jen Cueva. I from San Diego. I am a pulmonary hypertension patient of almost two decades. Throughout my journey with pulmonary hypertension, I have met some incredible healthcare providers, friends and family and loved ones and others in the pulmonary hypertension community. Before I was diagnosed with pulmonary hypertension, I was a hospice nurse. But, unfortunately, when I was diagnosed for a...
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Episode 509 - Jen Cueva
I'm Aware That I'm Rare: the phaware® podcast
Jen Cueva, a pulmonary hypertension patient of almost two decades, discusses her diagnosis, her advocacy work, and how she uses writing to support the pulmonary hypertension community. Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: .
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Stephen Gariepy - phaware® interview 508
I'm Aware That I'm Rare: the phaware® podcast
Canadian resident, Stephen Gariepy, was diagnosed with Chronic Thromboembolic Pulmonary Hypertension (CTEPH) in 2018. After initially being active in senior hockey, his condition worsened, leading to difficulty breathing and performing daily tasks. Gariepy continues to live with this rare and terminal disease, adapting to the limitations it imposes on his daily life. My name’s Stephen Gariepy. I’m from Edmonton Alberta in Canada. I was first diagnosed with CTEPH in 2018. What had happened was I had just recently retired and was beginning to enjoy retired life. I had joined a senior...
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Episode 508 - Stephen Gariepy
I'm Aware That I'm Rare: the phaware® podcast
Canadian resident, Stephen Gariepy, was diagnosed with Chronic Thromboembolic Pulmonary Hypertension (CTEPH) in 2018. After initially being active in senior hockey, his condition worsened, leading to difficulty breathing and performing daily tasks. Gariepy continues to live with this rare and terminal disease, adapting to the limitations it imposes on his daily life. Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: .
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Jolie Lizana - phaware® interview 507
I'm Aware That I'm Rare: the phaware® podcast
Jolie Lizana is a pulmonary hypertension (PH) survivor and advocate. Despite enduring severe heart failure and lengthy hospitalizations, Jolie credits her medical background, determination, and the love for her child for pushing her to survive and adapt. Jolie now raises awareness through her website, , and has contributed to creating EMS protocols for PH patients, showing her dedication to empowering others with hope and resources. My name is Jolie Lizana. I am in Slidell, Louisiana, and I have been diagnosed with PH since 2013. I went six years from doctor to doctor to doctor to doctor...
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Episode 507 - Jolie Lizana
I'm Aware That I'm Rare: the phaware® podcast
Jolie Lizana is a pulmonary hypertension (PH) survivor and advocate. Despite enduring severe heart failure and lengthy hospitalizations, Jolie credits her medical background, determination, and the love for her child for pushing her to survive and adapt. Jolie now raises awareness through her website, , and has contributed to creating EMS protocols for PH patients, showing her dedication to empowering others with hope and resources. Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: .
info_outlineMaureen Harper, a CTEPH patient from Canada, shares her journey with this rare condition. She initially thought she had an infection in her leg, but further tests revealed enlarged pulmonary arteries and multiple blood clots in her lungs. After being diagnosed with pulmonary hypertension, she underwent a complex surgery in Toronto to attempt to remove the clots. Maureen continues to work full-time as a pharmacy technician, remains active with her family and Girl Guide unit, and maintains a positive outlook, choosing to focus on the positives rather than dwell on the negatives.
Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: [email protected] Like, Subscribe and Follow us: www.phawarepodcast.com. @phacanada