Rare Candor

De : Pam Squires & Sarah Jones
  • Résumé

  • Welcome to Rare Candor, a podcast for people who live with and love someone with a rare disease. We'll talk about medications, accessing care, navigating everyday lift, policy and insurance issues, and more. Living with a rare disease can be an exhausting, annihilating, scary, lonely, unpredictable and invisible - for the people with their disease and those that love them. We promise not to make you depressed, peppered in humor is guaranteed, albeit likely dark humor - but we trust you will appreciate the rare candor.
    Pam Squires & Sarah Jones
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    Épisodes
    • From Shadows to Strength: The Quest of Acceptance
      Sep 10 2024

      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.

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      32 min
    • Whispers of Hope: Escaping the Prednisone Trap
      Aug 5 2024

      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.

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      38 min
    • Surviving The Suck: Getting Through the Bad Days
      Jul 23 2024

      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.

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      27 min

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