PODCAST

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

I"m Aware That I"m Rare: the phaware® podcast is devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early

health & fitness medicine

All Episodes

Amy Gietzen - phaware® interview 474

I"m Aware That I"m Rare: the phaware® podcast ·

2024/06/25

Amy Gietzen, a patient diagnosed with systemic scleroderma, shares her journey and experiences living with the disease. She discusses her initial symptoms, the shock of the diagnosis, and the lack of information and resources available at the time. Despite facing numerous challenges, including pulmonary fibrosis and pulmonary arterial hypertension, Amy maintains a positive outlook and a determination to be an exception to the prognosis. She emphasizes the importance of education, self-advocacy, and

11:51

Episode 474 - Amy Gietzen

I"m Aware That I"m Rare: the phaware® podcast ·

2024/06/24

Alvin Rocha, MSN RN CPN PHN - phaware® interview 473

I"m Aware That I"m Rare: the phaware® podcast ·

2024/06/18

Alvin Rocha is a nurse care manager and pulmonary hypertension coordinator at Children's Hospital Los Angeles. He manages PH patients from birth to early adulthood. His main goal is to prepare these patients for the transition into the adult world. He is excited about the advancements in therapies and clinical trials and looks forward to attending the World PH Symposium to learn more ways to help the patients and families he cares for. My name's Alvin Rocha. I am the nurse care manager or the

10:18

Episode 473 - Alvin Rocha MSN RN CPN PHN

I"m Aware That I"m Rare: the phaware® podcast ·

2024/06/17

Dunbar Ivy, MD - phaware® interview 472

I"m Aware That I"m Rare: the phaware® podcast ·

2024/06/11

Dr. Dunbar Ivy, a pediatric cardiologist at the University of Colorado, discusses the upcoming World Symposium on Pulmonary Hypertension, where experts from around the world will gather to discuss the progress made and future directions. Dr. Ivy highlights the work of the pediatric pulmonary hypertension task force, which aims to develop expert opinions on various topics, including the role of different therapies for patients who have failed all available medical treatments. The task force also

06:00

Episode 472 - Dunbar Ivy, MD

I"m Aware That I"m Rare: the phaware® podcast ·

2024/06/10

In this episode, Dr. Dunbar Ivy, a pediatric cardiologist at the University of Colorado, discusses the upcoming World Symposium on Pulmonary Hypertension, where experts from around the world will gather to discuss the progress made and future directions. Dr. Ivy highlights the work of the pediatric pulmonary hypertension task force, which aims to develop expert opinions on various topics, including the role of different therapies for patients who have failed all available medical treatments. The

Nola Martin - phaware® interview 471

I"m Aware That I"m Rare: the phaware® podcast ·

2024/06/04

Nola Martin shares her experience with pulmonary arterial hypertension (PAH). Nola describes the physical and mental challenges she faced, including fatigue, weight gain, and the need to ask for help. Nola emphasizes the importance of self-advocacy and fighting for one's own health. She recounts a situation where she had to push her doctor to listen to her concerns and change her medication. Despite the limitations, she has a better quality of life and encourages others to be their own advocates

14:17

Episode 471 - Nola Martin

I"m Aware That I"m Rare: the phaware® podcast ·

2024/06/03

Eric Austin, MD - phaware® interview 470

I"m Aware That I"m Rare: the phaware® podcast ·

2024/05/28

Dr. Eric Austin, a pediatric pulmonologist and pulmonary hypertension doctor, discusses the upcoming World Symposium on Pulmonary Hypertension, which will focus on various aspects of pulmonary hypertension research and clinical care. Dr. Austin is part of the task force on genetics and genomics, which aims to explore the genetic landscape of pulmonary hypertension and identify opportunities for future research and therapy development. He highlights the significance of the discovery of the BMPR2

12:42

Episode 470 - Eric Austin, MD

I"m Aware That I"m Rare: the phaware® podcast ·

2024/05/27

In this episode, Dr. Eric Austin, a pediatric pulmonologist and pulmonary hypertension doctor, discusses the upcoming World Symposium on Pulmonary Hypertension, which will focus on various aspects of pulmonary hypertension research and clinical care. Dr. Austin is part of the task force on genetics and genomics, which aims to explore the genetic landscape of pulmonary hypertension and identify opportunities for future research and therapy development. He highlights the significance of the discovery

Victoria McKinnon - phaware® interview 469

I"m Aware That I"m Rare: the phaware® podcast ·

2024/05/21

Victoria McKinnon shares her personal experience with pulmonary hypertension, specifically her son Owen’s eight week battle with the condition. Owen was diagnosed with alveolar capillary dysplasia (ACD), a genetic disease that causes pulmonary hypertension. Despite initial improvements, they ran out of treatment options and ultimately had to make the difficult decision to remove care. Victoria emphasizes the importance of communication and honesty from healthcare professionals, as well as the

16:22

Episode 469 - Victoria McKinnon

I"m Aware That I"m Rare: the phaware® podcast ·

2024/05/20

Wolf Haley - phaware® interview 468

I"m Aware That I"m Rare: the phaware® podcast ·

2024/05/14

Haley (aka @Wolf Haley), who was diagnosed with pulmonary hypertension (PH) at 18 years old, shares her journey with the disease and how she has found healing and purpose through art and advocacy. Haley discovered her passion for art as a form of therapy, using watercolor to express her thoughts and emotions about living with PH. Haley also works as a TikTok manager for a nonprofit organization and has become involved in advocacy work, using her personal experiences to advocate for healthcare

11:57

Episode 468 - Wolf Haley

I"m Aware That I"m Rare: the phaware® podcast ·

2024/05/13

Dr. Jason Weatherald - phaware® interview 467

I"m Aware That I"m Rare: the phaware® podcast ·

2024/05/07

Dr. Jason Weatherald, a pulmonologist at the University of Alberta, discusses a study on the socioeconomic burden of pulmonary arterial hypertension (PAH) in Canada. The study, conducted through PHA Canada, surveyed PAH patients and their caregivers to understand how the disease affects their ability to work and perform daily activities. The results showed that a significant number of PAH patients were unable to work or had limited career options due to the disease. The study also highlighted the

08:33

Episode 467 - Dr. Jason Weatherald

I"m Aware That I"m Rare: the phaware® podcast ·

2024/05/06

Karen Martinez - phaware® interview 466

I"m Aware That I"m Rare: the phaware® podcast ·

2024/04/30

Karen Martinez, a mother from Eastvale, California, shares her experience with Camp del Corazon, a camp for children with congenital heart defects and lung disease. Her daughter attended camp for the first time at the age of seven and has been going every summer since. The camp offers events throughout the year and fosters lifelong connections among the campers. My name is Karen Martinez. I'm from Eastvale, California. When I was pregnant, I was diagnosed with a child with a congenital heart

08:08

Episode 466 - Karen Martinez

I"m Aware That I"m Rare: the phaware® podcast ·

2024/04/29

Karen Martinez, a mother from Eastvale, California, shares her experience with Camp del Corazon, a camp for children with congenital heart defects and lung disease. Her daughter attended camp for the first time at the age of seven and has been going every summer since. The camp offers events throughout the year and fosters lifelong connections among the campers. #campdelcorazon #heartcamp #camplove #supportagoodcause Learn more about pulmonary hypertension trials at

Joellen Brown - phaware® interview 465

I"m Aware That I"m Rare: the phaware® podcast ·

2024/04/23

Joellen Brown shares her experience with pulmonary hypertension (PH) on the 15th anniversary of her diagnosis. Joellen was born with a hole in her heart and had her first open heart surgery at the age of two and a half. She believes she may have had PH since birth, but was not aware of it due to limited research in the 1950s. Joellen emphasizes the importance of having a supportive medical team and family, as well as being proactive in advocating for one’s own health. She encourages newly diagnosed

09:29

Episode 465 - Joellen Brown

I"m Aware That I"m Rare: the phaware® podcast ·

2024/04/22

In this episode, Joellen Brown shares her experience with pulmonary hypertension (PH) on the 15th anniversary of her diagnosis. Joellen was born with a hole in her heart and had her first open heart surgery at the age of two and a half. She believes she may have had PH since birth, but was not aware of it due to limited research in the 1950s. Joellen emphasizes the importance of having a supportive medical team and family, as well as being proactive in advocating for one's own health. She

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

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