Why We Say Disorder, Not Disease: Reframing Sickle Cell

Paradigm Shift: The New Era of IgA Nephropathy Treatment

Bonnie Schneider leads the IGA Nephropathy Foundation and has been on a long journey advocating for this condition for 21 years since her 13-year-old son was diagnosed. Bonnie shares how she transformed a mother's determination into a global movement that's helped bring the first specific treatments for IGA nephropathy to market after decades of relying only on steroids. We explore the challenges patients face, the breakthrough treatments now available, and why this is such an exciting time for the IGA nephropathy community.

The Silent Thief: A Paralympian's Journey with Glaucoma and Uveitis

Amy Dixon is a remarkable patient advocate in ophthalmology and USA Paralympian. Amy shares her powerful journey living with glaucoma and uveitis, having undergone 42 surgeries to save her remaining 2% vision. She discusses the critical importance of early diagnosis, treatment compliance, and establishing a partnership with your healthcare providers. Amy also reveals her passion for patient advocacy and her mission to ensure better support for those diagnosed with eye conditions. Join us for this fascinating conversation about living with vision loss while maintaining an extraordinary life.

Why We Say Disorder, Not Disease: Reframing Sickle Cell

Stephanie George is a patient advocate and peer mentor for the Sickle Cell Society. Stephanie shares her powerful personal journey living with sickle cell disorder, from childhood experiences to her work supporting young people with the condition. She discusses the unpredictable nature of sickle cell pain, treatment challenges, healthcare disparities, and the importance of awareness and community support. Join us for this illuminating conversation about a condition that impacts thousands of lives worldwide.

Tattoos, Ironmans, and Mountain Climbing: Redefining Life with Haemophilia

In this episode Scott McLean from the Haemophilia Society shares his personal journey living with severe haemophilia A, from childhood challenges to the transformative treatments available today. We explore the evolution of care, the psychological impact of the condition, and how modern therapies are allowing people with haemophilia to live fuller lives than ever before.

Lupus Warriors: Rewriting the Narrative of Chronic Illness

Gabrielle Davis is a patient advocate living with and championing awareness about lupus. Gabrielle shares her deeply personal journey—how she turned a life-altering diagnosis into a mission to educate, inspire, and build community for others living with chronic illness. We talk in detail about experiences navigating the healthcare system, balancing mental health, and finding hope in the toughest moments.