Rare Candor

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...

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 Ki...

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 disc...

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 opi...

This episode dives into the often overlooked topic of intimacy for people living with rare diseases, chronic conditions, and chronic pain. As the hosts highlight, the surge of issues such as weight gain from medications like prednisone, premature menopause from cyclophosphamide, and caregiver role reversals can all affect one's self-image and intimate life. Featuring guest expert Jessica Szyma...

In this episode of 'Rare Candor,' the author tackles the colossal mess of medication costs, focusing on Pharmacy Benefit Managers (PBMs). Frustration seeps through as the script dissects how PBMs drive up drug prices through lack of transparency and deceptive practices. The author unpacks the Byzantine mechanisms behind list prices and the hidden rebates that enrich everyone but the patient. Throu...

The podcast episode dives into the complex and often overlooked process of drug development, highlighting its impact on rare disease communities. Important information for anyone that takes medications! Hosts explore the decade-long journey from molecule discovery to market release, emphasizing the immense financial and regulatory challenges. Guest Ron Cohen, a seasoned pharmaceutical executive, r...

This episode of 'Rare Candor' delves deep into the intricate and often frustrating world of obtaining medication for rare diseases through insurance. It highlights the struggles of prior authorization, step therapy, and fail-first policies that patients and their doctors face head-on. Featuring insights from Michele Oshman of BIO and physician Stephen Chetham, the discussion underscores the necess...

This episode of 'Rare Candor' highlights the lengthy and painful diagnostic journey, it features personal accounts from Laura and Cara, who endured extensive medical visits, emotional exhaustion, and repetitive dismissals by healthcare providers. Laura shares her battle with myasthenia gravis, including misdiagnoses and the frustration of being treated as if her symptoms were imaginary. Ca...

In this episode of Rare Candor, we navigate the impact that chronic illness, fatigue and loss of stamina has on daily life, the requisite adjustment to newfound limitations, and the guilt shared between patient and partner. Laura Flanders shares the relentless toll Myasthenia Gravis takes on her energy and stamina and the tough adjustments she must make. The discussion dives into the internal conf...

This episode of 'Rare Candor' delves into the dual nature of Prednisone—a life-saving yet brutally demanding medication often prescribed for rare diseases. The hosts introduce Laure and Lynette, who recount the treatment journey and life today. The episode contrasts Prednisone's harsh impact with the optimism brought by emerging treatments like Tavneos, offering hope for improved quali...

This raw and heartfelt episode tackles the daily struggles of living with rare and chronic diseases, offering candid discussions on physical and emotional coping strategies. Personal stories highlight the unpredictability, isolation, and mental toll these conditions take. Personal stories and genuine conversations shed light on how people navigate the tough days, from finding joy in small moments...

This episode of 'Rare Candor' dives into the art of partnering with healthcare providers, especially relevant for those grappling with rare diseases. Featuring a chat with John Stadler, an MPA patient, the discussion highlights the emotional ups and downs of forming these critical partnerships. The episode underscores the importance of mutual respect, listening, and emotional intelligence...

This episode kicks off 'Rare Candor,' a podcast diving into the raw and unfiltered experiences of living with rare or chronic diseases. Hosts Sarah Jones and Pam Squires share their personal battles, especially Sarah's fight with EGPA (Eosinophilic Granulomatosis with Polyangiitis), and expose the glaring lack of research, persistent medical gaslighting, and the constant struggle withi...