Living with XLH

XLH Australia Inc.
  • 0.0 (0)
  • HEALTH & FITNESS

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.

Episodes

  1. 03/28/2025

    Living with XLH - Movement as Medicine

    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: Benefits of movement Guidelines for exercise Movement for pain management Maintaining muscle and connective tissue Links mentioned in this episode: www.xlhaustralia.com www.xlhnetwork.org This podcast is hosted by ZenCast.fm

    1h 2m

  2. 12/22/2024

    Living with XLH: Three generations

    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: Growing up with XLH Parenting a child with XLH A child's perspective Links mentioned in this episode: www.xlhaustralia.com This podcast is hosted by ZenCast.fm

    23 min

  3. 11/23/2024

    Living with XLH: Parenting a child with a rare disease

    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: The journey to diagnosis Parenting a child with a rare disease Navigating healthcare and advocacy Links mentioned in this episode: www.xlhaustralia.com This podcast is hosted by ZenCast.fm

    38 min

  4. 10/21/2024

    Living with XLH: Experiences from XLH India

    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: XLH journey as a spontaneous case Living healthy XLH India Links mentioned in this episode: http://xlhaustralia.com http://xlhindia.org This podcast is hosted by ZenCast.fm

    19 min
  • 4 Episodes

About

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.

Information

  • Creator
    XLH Australia Inc.
  • Years Active
    2024 - 2025
  • Episodes
    4
  • Rating
    Clean
  • Copyright
    © 2024
  • Show Website
    Living with XLH