Libsyn Directory

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...

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...

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...

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: .

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...

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: .

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...

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: .

Allison Fenstra - phaware® interview 506

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

Allison Feenstra shares her transformative journey from being an active, independent young woman to navigating life with pulmonary hypertension (PH). She recounts how a sudden blackout led to hospital visits and the discovery of the condition, stemming from complications related to prolonged bed rest and birth control medication. Allison candidly discusses how she underwent a significant surgery and persevered through a high-risk pregnancy, ultimately becoming a mother. My name is Allison Feenstra. I’m from a tiny town called Nobleford. I was born and raised there, lived there all my life....

Episode 506 - Allison Feenstra

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

Allison Feenstra shares her transformative journey from being an active, independent young woman to navigating life with pulmonary hypertension (PH). She recounts how a sudden blackout led to hospital visits and the discovery of the condition, stemming from complications related to prolonged bed rest and birth control medication. Allison candidly discusses how she underwent a significant surgery and persevered through a high-risk pregnancy, ultimately becoming a mother. Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your...

TOPICS