I’m Aware That I’m Rare: the phaware® podcast
Episode 513 - Kristin Highland, MD

Kristin Highland, MD, from the Cleveland Clinic discusses the importance of shared decision-making and patient preferences when treating patients with pulmonary hypertension. Dr. Highland, emphasizes that the patient is the true expert on their own body and that it is crucial to understand their perspective when making treatment decisions. She highlights the need to consider factors beyond just clinical outcomes, such as side effects, costs, and the patient’s ability to manage the therapy. She underscores the evolving role of patient-reported outcomes in medical decision-making and the need for open communication between providers and patients to ensure individualized and preference-aligned care.

I’m Aware That I’m Rare: the phaware® podcast
Episode 512 - Jimmy Ford, MD

Jimmy Ford, MD discusses the 7th World Symposium on Pulmonary Hypertension and his work on the Exploring the Patient Perspective in PH Task Force.

I’m Aware That I’m Rare: the phaware® podcast
Episode 510 - Drs. Kevin and Heather Shannon

Co-Founder and Board Member, Drs. Kevin and Heather Shannon share the inspiring story of Camp del Corazon - 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. #campdelcorazon #heartcamp #camplove

I’m Aware That I’m Rare: the phaware® podcast
Episode 509 - Jen Cueva

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.

I’m Aware That I’m Rare: the phaware® podcast
Episode 508 - Stephen Gariepy

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.

I’m Aware That I’m Rare: the phaware® podcast
Episode 505 - Jodi Berry

On the 28th anniversary of her PH diagnosis, Jodi Berry shares her journey of living with pulmonary hypertension. Despite facing an initial prognosis of only a few years to live, Jodi’s determination and the support of her family, friends, and healthcare professionals helped her manage her condition while maintaining an active lifestyle. Over time, advancements in treatments and her proactive participation in clinical trials provided hope and improved her quality of life.

I’m Aware That I’m Rare: the phaware® podcast
Episode 504 - Janette Reyes, NP

Nurse Practitioner Janette Reyes from the Pulmonary Hypertension Program at the Hospital for Sick Children shares her extensive experience caring for pediatric patients with pulmonary hypertension. Reyes discusses the unique challenges and developmental considerations involved in treating children from infancy through their teenage years, as they transition to adulthood. Reyes also touches on the emotional and social struggles these young patients face, such as bullying and anxiety, and highlights the role of the multidisciplinary team in supporting their mental well-being.

I’m Aware That I’m Rare: the phaware® podcast
Episode 503 - Jennifer Howard

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 happiness and refusing to let despair take root.