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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