XLH Australia Inc.

Living with XLH

Health EN ↓ 6 episodes

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.

Author

XLH Australia Inc.

Episodes

Living with XLH--healthcare transition 13.06.2026 20:05

This week, Dr Jessica Sandy explores the full landscape of healthcare transition (HCT) in X‑linked Hypophosphataemia (XLH). Drawing on clinician surveys, international consensus guidelines, and emerging Australian research, Dr Sandy highlights current challenges including lack of structured processes, limited resources, and the mental health burden and presents key recommendations such as early pr...

Living with XLH - Paediatric denistry in XLH 03.06.2026 26:22

This week,Associate Professor Mihiri Silva, speaks about the impact of XLH on teeth and oral health care. A/Prof Silva speaks on preventing and managing dental impacts: enamel pain/abscesses 3.treatment planning and family support Links mentioned in this episode: http://xlhaustralia.com This podcast is hosted by ZenCast.fm

Living with XLH - Movement as Medicine 28.03.2025 1:02:00

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...

Living with XLH: Three generations 22.12.2024 22:40

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

Living with XLH: Parenting a child with a rare disease 23.11.2024 37:44

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

Living with XLH: Experiences from XLH India 21.10.2024 18:54

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