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

Thekla McGinley - phaware® interview 484

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

2024/09/03

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

10:13

Episode 484 - Thekla McGinley

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

2024/09/02

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

Dr. Morris Salem - phaware® interview 483

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

2024/08/27

Dr. Morris Salem is a pediatric congenital cardiologist and adult congenital heart disease specialist at Kaiser Permanente in Southern California. He takes care of patients of all ages, from fetuses to elderly individuals. Dr. Salem's primary focus is interventional cardiac catheterization, specifically the closure of holes in the heart. He also deals with pulmonary hypertension and collaborates with referring physicians throughout Southern California. Dr. Salem works within the Kaiser system,

07:24

Episode 483 - Dr. Morris Salem

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

2024/08/26

Claire Champion, MSN, APRN, CPNP - phaware® interview...

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

2024/08/20

Claire Champion is a nurse practitioner at Texas Children's Hospital, specializing in pulmonary hypertension. As a nurse practitioner, she has the opportunity to see some of the patients as outpatients, which allows her to witness positive outcomes and the resilience of children. She also highlights the need for nurses to have a support system to cope with the emotional toll of the job. Claire encourages families to be open about their ongoing issues so that the healthcare team can provide the

06:39

Episode 482 - Claire Champion, MSN, APRN, CPNP

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

2024/08/19

Charles Burger, MD - phaware® interview 481

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

2024/08/13

Dr. Charles Burger, the medical director of the Pulmonary Vascular Center at Mayo Clinic in Jacksonville, Florida, discusses the importance of patient registries, specifically the Pulmonary Hypertension Association’s PHA Registry (PHAR) for pulmonary hypertension. This registry collects clinical information and surveys from patients to understand their characteristics, treatment options, and outcomes. The PHAR registry also provides opportunities for research on topics like social determinants of

09:26

Episode 481 - Charles Burger, MD

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

2024/08/12

In this episode, Dr. Charles Burger, the medical director of the Pulmonary Vascular Center at Mayo Clinic in Jacksonville, Florida, discusses the importance of patient registries, specifically the Pulmonary Hypertension Association’s PHA Registry (PHAR) for pulmonary hypertension. This registry collects clinical information and surveys from patients to understand their characteristics, treatment options, and outcomes. The PHAR registry also provides opportunities for research on topics like social

Dr. Dunbar Ivy - phaware® interview 480

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

2024/08/06

Dr. Dunbar Ivy, a pediatric cardiologist, discusses the value of repeat heart catheterization in patients with pulmonary hypertension. He highlights a recent study that compared the findings of the first and second heart catheterizations. The study showed that while the first heart catheterization is important for diagnosis and choosing the best therapies, it is not the best predictor of long-term outcomes. Dr. Ivy emphasizes that the decision to perform a second heart catheterization should be

0:00

Episode 480 - Dr. Dunbar Ivy

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

2024/08/05

In this episode, Dr. Dunbar Ivy, a pediatric cardiologist, discusses the value of repeat heart catheterization in patients with pulmonary hypertension. He highlights a recent study that compared the findings of the first and second heart catheterizations. The study showed that while the first heart catheterization is important for diagnosis and choosing the best therapies, it is not the best predictor of long-term outcomes. Dr. Ivy emphasizes that the decision to perform a second heart

Claire Parker, MS, PNP, AC - phaware® interview 479

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

2024/07/30

Claire Parker, a pediatric nurse practitioner, discusses the results of a study that examined the prevalence of anxiety and depression among adolescents with pediatric pulmonary hypertension. The project aimed to incorporate mental health screening into the standard care for PH patients, similar to what is done for cystic fibrosis patients. The results showed that 52% of the patients had symptoms of anxiety and/or depression. The study also found that females were slightly more likely to have

11:47

Episode 479 - Claire Parker, MS, PNP, AC

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

2024/07/29

In this episode, Claire Parker, a pediatric nurse practitioner, discusses the results of a study that examined the prevalence of anxiety and depression among adolescents with pediatric pulmonary hypertension. The project aimed to incorporate mental health screening into the standard care for PH patients, similar to what is done for cystic fibrosis patients. The results showed that 52% of the patients had symptoms of anxiety and/or depression. The study also found that females were slightly more

Tina Proulx - phaware® interview 478

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

2024/07/23

Tina Proulx was diagnosed with pulmonary hypertension at the age of 19. She experienced difficulty breathing and chest pain, leading to a diagnosis of chronic thromboembolic pulmonary hypertension (CTEPH), a condition caused by blood clots in the lungs. Tina eventually underwent transplant and celebrated eight years post-transplant, surpassing the average lifespan post-transplant. Tina emphasizes the importance of advocating for oneself in the healthcare system and encourages others to trust their

16:28

Episode 478 - Tina Proulx

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

2024/07/22

Marilyn Hanft - phaware® interview 477

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

2024/07/16

Marilyn Hanft, a CTEPH patient, shares her experience with the condition. In 2011, she initially mistook her symptoms for asthma but later discovered she had clots in her lungs. Despite her health challenges, she remains determined to live life to the fullest. Hanft discusses her love for sailing and her current plan for writing a book about her sailing experiences. My name is Marilyn Hanft. I'm a CTEPH patient. I live in St. Marys, Georgia, but I'm from Maine and lived most of my life in New

09:51

Episode 477 - Marilyn Hanft

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

2024/07/15

Marilyn Hanft, a CTEPH patient, shares her experience with the condition. In 2011, she initially mistook her symptoms for asthma but later discovered she had clots in her lungs. Despite her health challenges, she remains determined to live life to the fullest. Hanft discusses her love for sailing and her current plan for writing a book about her sailing experiences. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a

Scott Fleetwood - phaware® interview 476

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

2024/07/09

Scott Fleetwood, a former pulmonary hypertension patient from Buffalo, New York, shares his journey with rare diseases. He initially experienced shortness of breath while playing hockey and was later diagnosed with pulmonary hypertension and scleroderma. Scott received a double lung transplant in 2017. He discusses the initial fear he felt upon learning about his condition and the importance of finding a doctor you trust and following their instructions. He acknowledges the challenges and risks

12:41

Episode 476 - Scott Fleetwood

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

2024/07/08

Robert Frantz, MD - phaware® interview 475

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

2024/07/02

Dr. Robert Frantz, a cardiologist at the Mayo Clinic, discusses current and upcoming clinical research in pulmonary arterial hypertension (PAH). He emphasizes the low participation rate of PAH patients in clinical trials and encourages patients to consider participating, as it not only benefits themselves but also helps advance medical knowledge. @MayoClinic @MayoMedEd I am Dr. Robert Frantz. I'm a cardiologist at the Mayo Clinic in Rochester, Minnesota and Director of the Pulmonary Hypertension

07:41

Episode 475 - Robert Frantz, MD

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

2024/07/01

In this episode, Dr. Robert Frantz, a cardiologist at the Mayo Clinic, discusses current and upcoming clinical research in pulmonary arterial hypertension (PAH). He emphasizes the low participation rate of PAH patients in clinical trials and encourages patients to consider participating, as it not only benefits themselves but also helps advance medical knowledge. @MayoClinic @MayoMedEd Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social

194 results

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

All Episodes

Similar Podcasts

Доктор Тройняшкин

Доктор Тройняшкин

The Dry Eye Treatment PODCAST

Dry Eye Treatment

Différent et alors ?

PATRICK SULAY

Kyle Kingsbury Podcast

Kyle Kingsbury

The Real Weight Loss Coach

Matty Lansdown