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  • Finding Comfort within the Unknown: Hope, Boundaries, and Beyond
    2024/05/08

    Welcome back to the Rare Matters Podcast! I'm your host, Mikey Stone, and in this episode, we embark on a journey through the intricate landscape of life as a disabled individual. Join me as I candidly share my personal experiences, insights, and hard-won wisdom, offering a glimpse into the challenges and triumphs that shape my everyday existence.

    From navigating societal perceptions to embracing resilience and hope, I delve into the complexities of living with a disability, shedding light on the nuances often overlooked by mainstream discourse. As we explore the significance of boundaries, I offer invaluable guidance on setting healthy limits with healthcare providers, friends, and loved ones, emphasizing the paramount importance of prioritizing one's emotional well-being above societal expectations.

    Through heartfelt anecdotes and empowering narratives, we unravel the layers of stigma and misconception, championing self-advocacy and authenticity in the face of adversity. Join me as we challenge preconceived notions, ignite conversations, and champion a future where inclusivity and understanding reign supreme.

    In a world where conformity often masquerades as comfort, I urge you to embrace your uniqueness unabashedly, for therein lies the true essence of liberation. Tune in as we embark on this transformative journey together, because in the realm of Rare Matters, every voice, every story, and every boundary crossed, matters.

    Remember, your story matters, and your resilience knows no bounds.

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    1 時間 12 分
  • Courageously Candid: Living with Addison's Disease and Functional Neurological Disorder - Savannah's Story
    2024/05/01

    In the latest installment of the Rare Matters Podcast, we have the honor of sitting down with Savannah, a remarkable individual navigating life with Addison's Disease, Functional Neurological Disorder, and a cluster of yet-to-be-diagnosed conditions. In a candid and courageous conversation, Savannah sheds light on the daily realities of living with multiple chronic illnesses. Join us as we delve into her journey, exploring the triumphs, challenges, and the resilience that defines her experience. Tune in to gain insight, empathy, and a deeper understanding of the often unseen battles faced by those living with rare conditions.

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    55 分
  • Exploring Medical Gaslighting and Self Advocacy
    2024/04/24

    Join us for the second episode of Rare Matters, where we delve into the crucial yet often overlooked topic of medical gaslighting. In this episode, we uncover what medical gaslighting entails, shed light on its subtle manifestations, and equip you with the tools to identify and combat it. Through insightful discussion and a compelling personal narrative, we explore the journey of self-advocacy, empowering listeners to navigate the healthcare system with confidence and resilience. Tune in to discover the power of advocacy and reclaim your voice in your healthcare journey.

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    46 分
  • My Story: LIving with an Undiagnosed Rare Disease and Winning The Genetic Lottery
    2024/04/20

    Introducing the inaugural episode of Rare Matters Podcast, where host Mikey Stone courageously delves into his personal odyssey living with an undiagnosed rare disease. In this groundbreaking debut, Mikey offers an intimate glimpse into his profound medical journey, unraveling the complexities of his diagnosis quest like never before. Through candid storytelling and heartfelt introspection, Mikey lays the foundation for what promises to be a compelling exploration of the rare disease landscape. Join us as we embark on a journey of resilience, advocacy, and unwavering determination, setting the stage for future episodes where we'll delve deeper into the lives of those navigating the rarities of existence.

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    1 時間 29 分