Thriving in The Rare: Journeys of Resilience and Growth

Deborah Vick
  • 0.0 (0)
  • Mental Health

Thriving in the Rare is a podcast dedicated to amplifying the voices of individuals living with rare diseases and complex chronic conditions. Through candid conversations with patients, caregivers, and advocates, this series explores what it truly means to move forward in the face of uncertainty, loss, and change. Each episode highlights personal journeys of adaptation—navigating diagnosis, redefining identity, managing invisible symptoms, and finding new ways to live meaningful, connected lives. Guests share how they have transformed challenge into purpose through advocacy, creativity, mindfulness, community, and self-discovery. Together, we examine the physical, emotional, and social realities of living with rare conditions while focusing on resilience, empowerment, and the possibility of growth beyond diagnosis. This podcast is for anyone impacted by rare disease—whether you are living with a condition, supporting a loved one, or working to improve care and awareness—seeking connection, understanding, and hope for the road ahead.

Episodes

  1. Feb 28

    Advocating in the Invisible: Thriving with CRPS and Blindness

    In this episode of Thriving in the Rare: Journeys of Resilience and Growth, we sit down with Nickie Coby to explore her lived experience navigating blindness and Complex Regional Pain Syndrome (CRPS), a rare and often misunderstood neurological pain condition. Born blind and later diagnosed with CRPS at age 16, Nickie shares the emotional and physical challenges of managing a condition where the body’s pain response remains amplified long after an injury has healed. Together, we discuss how chronic pain can impact not only physical health, but mental wellbeing, independence, and identity. Nickie opens up about the turning points in her journey—from periods of hopelessness to discovering tools that helped her move forward, including Dialectical Behavior Therapy (DBT), mindfulness, creativity, and adaptive yoga. She shares how community support, affirmations, and celebrating small wins have helped her regain a sense of control and continue advocating for herself and others living with invisible disabilities. This conversation explores: Living with Complex Regional Pain Syndrome (CRPS)The intersection of chronic illness, disability, and mental healthNavigating visible and invisible disabilitiesMindfulness as a tool for tension and pain managementAdaptive yoga for individuals with blindness and chronic painSpoon theory and managing chronic fatigueThe power of creativity and choice in daily copingBuilding resilience through community supportNickie reminds us that even when the journey feels dark, growth and improvement are still possible—sometimes in ways we never expected.

    42 min
  • 1 Episode

About

Thriving in the Rare is a podcast dedicated to amplifying the voices of individuals living with rare diseases and complex chronic conditions. Through candid conversations with patients, caregivers, and advocates, this series explores what it truly means to move forward in the face of uncertainty, loss, and change. Each episode highlights personal journeys of adaptation—navigating diagnosis, redefining identity, managing invisible symptoms, and finding new ways to live meaningful, connected lives. Guests share how they have transformed challenge into purpose through advocacy, creativity, mindfulness, community, and self-discovery. Together, we examine the physical, emotional, and social realities of living with rare conditions while focusing on resilience, empowerment, and the possibility of growth beyond diagnosis. This podcast is for anyone impacted by rare disease—whether you are living with a condition, supporting a loved one, or working to improve care and awareness—seeking connection, understanding, and hope for the road ahead.

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