Rare Candor

By: Pam Squires & Sarah Jones
  • Summary

  • 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
    Show more Show less
activate_Holiday_promo_in_buybox_DT_T2
Episodes
  • Challenging Diagnosis. Unyielding Courage.
    Sep 22 2024

    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.

    Show more Show less
    32 mins
  • 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.

    Show more Show less
    32 mins
  • 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.

    Show more Show less
    38 mins

What listeners say about Rare Candor

Average customer ratings

Reviews - Please select the tabs below to change the source of reviews.