On One Condition

著者: Sylvain Berthelot
  • サマリー

  • On One Condition is a podcast for anyone who wants to learn about a specific health condition. Hear from people who live with a condition, how it affects them and how they manage it. Sylvain Berthelot has worked in the clinical trial industry for over a decade. He is naturally curious and passionate about how the body functions. Through his interviews, he aims to give fellow human beings a voice, spreading the word about the multitude of medical conditions that affect us.

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  • Episode 48: Daniel DeFabio - Menkes Disease
    2024/10/23

    In this heartfelt episode, Daniel opens up about his journey with his son, Lucas, who was diagnosed with Menkes disease, a rare genetic disorder. Daniel shares the emotional challenges, personal growth, and love that shaped his family's experience. He discusses the need to adjust expectations as a parent, from the small things like waiting nine years for Lucas to grab his finger, to facing the reality that Lucas' life would be short. The podcast touches on the emotional rollercoaster of caring for a child with a life-limiting illness, but also celebrates the joy Lucas brought to their lives. Daniel’s reflections are filled with warmth, sorrow, and lessons learned from his son’s light.

    The song that Daniel chose is Starlight by Muse.

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    37 分
  • Episode 47: Erin Paterson - Huntington's Disease
    2024/10/09

    Erin opens up about discovering Huntington's disease in her family when she was in her early 30s. She talks about her father and how his outbursts and behavioral changes, often misunderstood, were early signs of the disease. Erin reflects on her own diagnosis, the emotional burden of being gene-positive, and the delicate task of caregiving while also being a mother. We also talk about Erin’s passion for writing and storytelling, particularly her books, which focus on HD, rare diseases, and patient advocacy. She emphasizes the power of storytelling in the HD community, giving a voice to patients, caregivers, and families.

    The song that Erin selected is Yer Fall by Hey Rosetta.

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    34 分
  • Episode 46: Mike Davies - Eczema
    2024/09/25

    Mike discusses his lifelong battle with eczema and recent struggles with suspected topical steroid withdrawal (TSW). After being prescribed steroid creams in 2021, Mike found that using it months apart worsened his flare-ups. Eventually, he stopped using the creams, which led to severe symptoms affecting his entire body. Mike shares the physical and emotional challenges of living with eczema, and the importance of self-advocacy and alternative approaches to treatment. Through his voice, he hopes others will consider ways of managing eczema before moving on to treatments such as steroid creams.

    The song that Mike selected is Everybody breaks by Ivan and Alyosha.

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    35 分

あらすじ・解説

On One Condition is a podcast for anyone who wants to learn about a specific health condition. Hear from people who live with a condition, how it affects them and how they manage it. Sylvain Berthelot has worked in the clinical trial industry for over a decade. He is naturally curious and passionate about how the body functions. Through his interviews, he aims to give fellow human beings a voice, spreading the word about the multitude of medical conditions that affect us.

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