Libsyn Directory

Episode 503 - Jennifer Howard

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

Jennifer Howard’s inspiring story is one of resilience and hope in the face of immense challenges. Diagnosed with idiopathic pulmonary arterial hypertension (IPAH) in July 2019 after a long and frustrating path to answers, Jennifer faced the daunting reality of living with a chronic illness requiring continuous IV medication through a pump. Despite the overwhelming nature of her diagnosis, Jennifer discovered an inner strength she never knew she had. With a focus on living life to the fullest, she learned to navigate both the bad days and the good, embracing moments that brought her...

Kaitlyn Salonga - phaware® interview 502

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

Kaitlyn Salonga shares her journey of resilience and advocacy while living with pulmonary hypertension (PH). Kaitlyn recounts her fight for personal autonomy, including a successful battle to secure surgery for her reproductive health after initial denials due to weight and health concerns. Through her triumphs, she highlights the importance of advocating for oneself in the face of medical and societal challenges. Her story is a powerful testament to embracing one’s identity, breaking down stigma, and showing that life with PH can be fulfilling and bold. My name’s Kaitlyn Salonga. I also...

Episode 502 - Kaitlyn Salonga

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

Kaitlyn Salonga shares her journey of resilience and advocacy while living with pulmonary hypertension (PH). Kaitlyn recounts her fight for personal autonomy, including a successful battle to secure surgery for her reproductive health after initial denials due to weight and health concerns. Through her triumphs, she highlights the importance of advocating for oneself in the face of medical and societal challenges. Her story is a powerful testament to embracing one’s identity, breaking down stigma, and showing that life with PH can be fulfilling and bold. Learn more about pulmonary...

Lisa Mielniczuk, MD - phaware® interview 501

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

Dr. Lisa Mielniczuk, a cardiologist at the Mayo Clinic in Rochester, shares her personal journey of becoming interested in pulmonary hypertension and the challenges faced by patients in accessing care. Dr. Mielniczuk emphasizes the importance of building connections with patients and involving them in decision-making. She discusses the CRAVE study, which aims to test novel and repurposed therapies for right heart failure using a platform trial design. She highlights the importance of patient involvement in the trial design and its upcoming feasibility study. My name is Lisa Mielniczuk. I am...

Episode 501 - Lisa Mielniczuk, MD

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

Dr. Lisa Mielniczuk, a cardiologist at the Mayo Clinic in Rochester, shares her personal journey of becoming interested in pulmonary hypertension and the challenges faced by patients in accessing care. Dr. Mielniczuk emphasizes the importance of building connections with patients and involving them in decision-making. She discusses the CRAVE study, which aims to test novel and repurposed therapies for right heart failure using a platform trial design. She highlights the importance of patient involvement in the trial design and its upcoming feasibility study. Learn more about pulmonary...

Jason Weatherald, MD - phaware® interview 500

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

In our 500th episode, Dr. Jason Weatherald, a pulmonologist at the University of Alberta in Canada, discusses a project called CRAVE (Canadian Right Ventricular Failure Adaptive Platform) to address the lack of treatments for right heart failure in patients with pulmonary hypertension. He explains that platform trials, which allow for multiple interventions to be tested simultaneously, are more efficient and offer a higher chance of receiving a potential therapy compared to traditional clinical trials. Dr. Weatherald emphasizes the importance of patient involvement in research and...

Episode 500 - Jason Weatherald, MD

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

In our 500th episode, Dr. Jason Weatherald, a pulmonologist at the University of Alberta in Canada, discusses a project called CRAVE (Canadian Right Ventricular Failure Adaptive Platform) to address the lack of treatments for right heart failure in patients with pulmonary hypertension. He explains that platform trials, which allow for multiple interventions to be tested simultaneously, are more efficient and offer a higher chance of receiving a potential therapy compared to traditional clinical trials. Dr. Weatherald emphasizes the importance of patient involvement in research and...

Tanya Stinson - phaware® interview 499

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

Tanya Stinson shares her journey of being diagnosed with pulmonary hypertension (PH) after persistent symptoms and misdiagnoses. Her struggle highlights the difficulty of finding the right diagnosis and the emotional toll of living with a rare, chronic disease. Tanya’s experience underlines the fear, mental challenges, and hope intertwined in navigating PH, inspiring others to seek support and find solace in community, showing that even in isolation, they are not alone. My name is Tanya Stinson. I’m from a really small town in Manitoba called Saint Eustache Manitoba. It’s about half an...

Episode 499 - Tanya Stinson

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

Tanya Stinson shares her journey of being diagnosed with pulmonary hypertension (PH) after persistent symptoms and misdiagnoses. Her struggle highlights the difficulty of finding the right diagnosis and the emotional toll of living with a rare, chronic disease. Tanya’s experience underlines the fear, mental challenges, and hope intertwined in navigating PH, inspiring others to seek support and find solace in community, showing that even in isolation, they are not alone. Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your...

Hall Skaara (Bel Air Center) - phaware® interview 498

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

Hall Skaara, a resilient PH patient and founder of the Norwegian Association for Pulmonary Hypertension, recounts his 19-year journey living with idiopathic pulmonary hypertension. He shares how he transformed the challenges of the pandemic into an innovative opportunity by helping create the , a virtual global PH community space. The Bel Air Center aims to foster global connections, support, and resources for patients, caregivers, and healthcare professionals. My name is Hall Skaara. I am a patient. I was diagnosed with idiopathic pulmonary hypertension in 2005. So, I've been living...

TOPICS