Episode 453 - PHenomenal Hope 2023
I'm Aware That I'm Rare: the phaware® podcast
Release Date: 01/29/2024
I'm Aware That I'm Rare: the phaware® podcast
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 instincts and fight for their needs. My name is Tina Proulx. I'm originally from Sudbury,...
info_outline Episode 478 - Tina ProulxI'm Aware That I'm Rare: the phaware® podcast
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 instincts and fight for their needs. Learn more about pulmonary hypertension trials...
info_outline Marilyn Hanft - phaware® interview 477I'm Aware That I'm Rare: the phaware® podcast
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 England. In 2011, I was around all this foliage that was all blooming, and I'm not used to...
info_outline Episode 477 - Marilyn HanftI'm Aware That I'm Rare: the phaware® podcast
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 . Follow us on social @phaware Engage for a cure: #phaware Share your story:
info_outline Scott Fleetwood - phaware® interview 476I'm Aware That I'm Rare: the phaware® podcast
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 associated with lung transplants but highlights the positive outcomes he has experienced, such as...
info_outline Episode 476 - Scott FleetwoodI'm Aware That I'm Rare: the phaware® podcast
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 associated with lung transplants but highlights the positive outcomes he has experienced, such as...
info_outline Robert Frantz, MD - phaware® interview 475I'm Aware That I'm Rare: the phaware® podcast
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. I am Dr. Robert Frantz. I'm a cardiologist at the Mayo Clinic in Rochester, Minnesota and Director of the Pulmonary Hypertension Clinic there. Today, I'd like to talk a little bit about what's in the pipeline in clinical research in pulmonary...
info_outline Episode 475 - Robert Frantz, MDI'm Aware That I'm Rare: the phaware® podcast
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. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: #phawareMD
info_outline Amy Gietzen - phaware® interview 474I'm Aware That I'm Rare: the phaware® podcast
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 being proactive in managing one's health. Learn even more about Nola and PAH at ....
info_outline Episode 474 - Amy GietzenI'm Aware That I'm Rare: the phaware® podcast
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 being proactive in managing one's health. Learn even more about Nola and PAH at ....
info_outlineIn this episode, Drs. Patricia George and Harrison "Hap" Farber from Team PHenomenal Hope discuss takeaways and learning from PHenomenal Hope 2023. This symposium offered a combination of oral presentations, expert panel discussions, and poster sessions in an environment that encourages collaboration and a deeper exploration of patient-centered research.
They also discuss Team PH's 2024 Research Award program, looking for topics that will help expand access to care and improve clinical status by looking specifically for projects in the topic areas outlined at the PHenomenal Hope 2023 research meeting.
Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: [email protected] #phawareMD