• Episode 42: Ray Huml - FSHD

  • 2024/07/31
  • 再生時間： 40 分
  • ポッドキャスト

Episode 42: Ray Huml - FSHD

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  • Both Ray's children were born with FSHD (Facioscapulohumeral Muscular Dystrophy), a common yet lesser-known form of muscular dystrophy. He discusses the challenges they face daily, such as muscle weakness and limited mobility. Ray highlights the importance of the patient voice in understanding and treating rare diseases, drawing from his professional experience in the rare disease sector and his role as a father. He also touches on the role of community support and the ongoing need for research to better understand and combat FSHD and other rare diseases.

    The song that Ray chose is SPACES, a song written by the Spinal Muscular Atrophy community and sung by James Ian.
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あらすじ・解説

Both Ray's children were born with FSHD (Facioscapulohumeral Muscular Dystrophy), a common yet lesser-known form of muscular dystrophy. He discusses the challenges they face daily, such as muscle weakness and limited mobility. Ray highlights the importance of the patient voice in understanding and treating rare diseases, drawing from his professional experience in the rare disease sector and his role as a father. He also touches on the role of community support and the ongoing need for research to better understand and combat FSHD and other rare diseases.

The song that Ray chose is SPACES, a song written by the Spinal Muscular Atrophy community and sung by James Ian.
身体的病い・疾患 衛生・健康的な生活
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Episode 42: Ray Huml - FSHDに寄せられたリスナーの声

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