In this episode, the host discusses the deeply personal journey of Jesse, a patient living with Generalized Myasthenia Gravis (gMG). Jesse shares his story of initially training to be a firefighter, only to face unexpected symptoms and a subsequent diagnosis that changed his life. From being in peak physical condition to struggling with daily tasks, Jesse opens up about the emotional rollercoaster, the dark times, and the significant breakthrough of accepting his condition. With the support of therapy, friends, and family, Jesse emphasizes that 'acceptance is not failure,' and highlights the power of connection, empathy, and resilience in navigating life with a rare disease. The episode sheds light on the unpredictability and invisible struggles of living with gMG, aiming to inspire and offer solace to others in similar situations.

Living with vasculitis—particularly GPA, MPA, and EGPA—is a winding journey filled with trial and error, especially when it comes to kidney damage, a silent but deadly threat. This podcast episode emphasizes practical advice from Laure Larkin, a GPA patient with severe kidney damage, and her wife Lynette. They delve into real-life strategies managing kidney health and the importance of the HEAT Kit—a vital resource for emergency medical situations. Expert tips include monitoring symptoms divided into critical (red) and concerning (yellow) zones, and the essential advocacy needed when dealing with uninformed medical specialists. With insights on breakthrough treatments like avacopan (Tavneos) and the realities of quick-onset kidney crises, this episode is packed with expert advice and authentic patient perspectives to empower anyone facing the unpredictable swings of vasculitis.

In this episode of 'Rare Candor,' we shed light on the stark reality that 95% of rare diseases are without treatment. Enter Fasenra (benralizumab)—the newest treatment for those navigating eosinophilic granulomatosis with polyangiitis (EGPA). Sarah, alongside Dr. Jessica Most, dives deep into Fasenra's unique mechanism of unleashing natural killer cells to tackle eosinophils. They discuss the importance of treating patients with respect, arming them with all the facts and data they crave. The duo also navigates through safety concerns, dosing intricacies, and the uphill battle with insurance companies. Pam ends the episode by sharing tips to help your doctor, and insurance, wrap their heads around the unique dosing for EGPA. Bold, unapologetic, and utterly essential for anyone in the rare disease community.