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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 specia... more
FAQs about Living with XLH:How many episodes does Living with XLH have?The podcast currently has 4 episodes available.
March 28, 2025Living with XLH - Movement as MedicineThis 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 movementGuidelines for exerciseMovement for pain managementMaintaining muscle and connective tissueLinks mentioned in this episode:www.xlhaustralia.comwww.xlhnetwork.orgThis podcast is hosted by ZenCast.fm...more1h 2minPlay
December 22, 2024Living with XLH: Three generationsThis 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 XLHParenting a child with XLHA child's perspective Links mentioned in this episode:www.xlhaustralia.comThis podcast is hosted by ZenCast.fm...more23minPlay
November 23, 2024Living with XLH: Parenting a child with a rare diseaseThis 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 diagnosisParenting a child with a rare diseaseNavigating healthcare and advocacyLinks mentioned in this episode:www.xlhaustralia.comThis podcast is hosted by ZenCast.fm...more38minPlay
October 21, 2024Living with XLH: Experiences from XLH IndiaThis 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 caseLiving healthyXLH IndiaLinks mentioned in this episode:http://xlhaustralia.comhttp://xlhindia.orgThis podcast is hosted by ZenCast.fm...more19minPlay
FAQs about Living with XLH:How many episodes does Living with XLH have?The podcast currently has 4 episodes available.