Living with XLH

Auteur(s): XLH Australia Inc.
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  • Résumé

  • 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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Épisodes
  • Living with XLH: Three generations

    Living with XLH: Three generations
    Dec 22 2024

    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 min
  • Living with XLH: Parenting a child with a rare disease

    Living with XLH: Parenting a child with a rare disease
    Nov 23 2024

    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 min
  • Living with XLH: Experiences from XLH India

    Living with XLH: Experiences from XLH India
    Oct 21 2024

    This week, XLH Australia President Sandy Bevc and Vice President Naomi Ford are joined by Prakalp Sudhakar who is the founder and chair of XLH India.

    Topics discussed:

    1. XLH journey as a spontaneous case
    2. Living healthy
    3. XLH India

    Links mentioned in this episode:

    • http://xlhaustralia.com
    • http://xlhindia.org

    This podcast is hosted by ZenCast.fm
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    19 min

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