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 to manage 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.

This episode dives deep into the critical topic of second opinions for those battling rare diseases. Emphasizing the often-overlooked value of getting a second—or even third—medical opinion, it compares the practice to seeking multiple quotes for major home repairs. Through a candid conversation with Dr. Samantha Shapiro, a rheumatologist from Johns Hopkins now in private practice doing second opinions, the episode highlights the necessity of expert insights, especially when dealing with complex, rare conditions. The importance of feeling heard, validated, and understood by healthcare providers is stressed, alongside practical tips for securing second opinions, like using platforms such as Second MD and leveraging crowdfunding sources like GoFundMe for financial support. Ultimately, the message is clear: patients deserve comprehensive care and should never settle for mediocre medical advice.