Living with XLH

著者： XLH Australia Inc.
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  • サマリー

  • Living with XLH explores the challenges and issues of navigating through a diagnosis of the rare, life-long condition, X-linked Hypophosphatemia (XLH). You'll hear from paediatric and adult XLH specialists, as well as from people living with XLH on their different patient perspectives from children, teenagers and adults, plus their family members.
    © 2024
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あらすじ・解説

Living with XLH explores the challenges and issues of navigating through a diagnosis of the rare, life-long condition, X-linked Hypophosphatemia (XLH). You'll hear from paediatric and adult XLH specialists, as well as from people living with XLH on their different patient perspectives from children, teenagers and adults, plus their family members.
© 2024
衛生・健康的な生活 身体的病い・疾患
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エピソード
  • Living with XLH - Movement as Medicine

    Living with XLH - Movement as Medicine
    2025/03/28

    This week, Sandy and Naomi speak with Advanced Exercise Physiologist and Co-Chair International Clinical Exercise Physiology Network, Luke Snabaitis, about exercise as medicine.....

    Topics discussed:

    1. Benefits of movement
    2. Guidelines for exercise
    3. Movement for pain management
    4. Maintaining muscle and connective tissue

    Links mentioned in this episode:

    • www.xlhaustralia.com
    • www.xlhnetwork.org

    This podcast is hosted by ZenCast.fm
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    1 時間 2 分
  • Living with XLH: Three generations

    Living with XLH: Three generations
    2024/12/22

    This week, Naomi and Sandy speak with Suzanne, Royce, Angela, Georgia and Eli--three generations, each with unique experiences and perspectives on life with XLH—and life as part of an XLH family!

    Topics discussed:

    1. Growing up with XLH
    2. Parenting a child with XLH
    3. A child's perspective

    Links mentioned in this episode: www.xlhaustralia.com

    This podcast is hosted by ZenCast.fm
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    23 分
  • Living with XLH: Parenting a child with a rare disease

    Living with XLH: Parenting a child with a rare disease
    2024/11/23

    This week, XLH Australia President Sandy Bevc and XLH Australia Vice President Naomi Ford speak with their mothers about their experiences parenting a child with a rare condition.

    Topics discussed:

    1. The journey to diagnosis
    2. Parenting a child with a rare disease
    3. Navigating healthcare and advocacy

    Links mentioned in this episode: www.xlhaustralia.com

    This podcast is hosted by ZenCast.fm
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    38 分

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