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 necessity for patients to be relentless advocates for their health. Alongside the exploration of bureaucratic hurdles, practical advice is given on appeals and leveraging pharmaceutical company resources. The narrative is punctuated by candid stories, emphasizing the importance of persistence and community support in overcoming these systemic barriers.

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. Cara describes how despite advocating fiercely for herself, she faced significant delays in getting the necessary treatment for GPA.The episode underscores the resilience, determination, and immense courage required to navigate the healthcare system while living with a rare disease. It offers a beacon of hope and solidarity through shared stories and the importance of advocating for oneself despite the systemic challenges. The episode closes with a reflection of the Serenity Prayer, emphasizing acceptance, courage, and wisdom in the face of ongoing struggles.

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 conflict of accepting help. Laura vividly recounts her life-altering experiences, from struggling to mow the lawn to making decisions about her career. Her story is a powerful testament to resilience, highlighting the ongoing adaptation required to navigate an unpredictable and often invisible illness. Ultimately, the episode looks at the struggle for balance and acceptance in a life forever changed by chronic disease while stressing the importance of compassionate self-awareness and support systems.

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 quality of life. The candid discussion sheds light on the harsh realities of living with rare diseases and the emotional toll on both patients and caregivers, emphasizing resilience and the constant search for better alternatives. Despite the challenges, there's a strong message of hope and the continuous pursuit of better treatments for a better future for all rare diseases.

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 and emphasizing practical tips like engaging in physical activity, emotional expression, and the importance of support networks. Through shared experiences, this episode includes a conversation with Rachel Young, who has vasculitis, as well as impromptu strategies from a support group, offering a look at how people push through their darkest moments, emphasizing strength, fierce determination, and resilience for both patients and their caregivers.

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 in doctors. Also, it presents the HEAT kit as a game-changer for patients, offering practical advice for navigating the healthcare maze. The conversation touches upon historical and gender disparities in medical research, reinforcing the need for patients to be well-prepared advocates for their health.

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 within a failing healthcare system. With a foundation of empathy, they aim to smash the loneliness of rare disease sufferers by sharing real stories, healthcare hacks, and policy discussions. Prepare to have candid and empowering conversations that bring a voice to the often overlooked and misunderstood rare disease community.

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