Living with XLH ZenCast (https://zencast.fm) 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 en Sat, 13 Jun 2026 23:48:12 +0000 https://living-with-xlh.zencast.website https://podcdn.zencast.fm/download/Podcast%2Fartworks%2F14818%2Flarge%2F77ba22d133eff1f53f263d43dc651a9e199c74067ccd8524969bb3c592a04fc2%2F3aa91a57cb18abe6.png Living with XLH https://living-with-xlh.zencast.website XLH Australia Inc. XLH Australia Inc. Living with XLH 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. 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. episodic XLH,X-linked hypophosphatemia,rare disease,patient support,patient care,equity in healthcare XLH Australia Inc. xlhaustralia@gmail.com No false No yes full 6 1 6 1 Living with XLH--healthcare transition Living with XLH--healthcare transition Transition from paediatric to adult healthcare No No 70e1d9e2-3b42-4129-b3d4-9482272d519a Sat, 13 Jun 2026 23:47:14 +0000 XLH Australia Inc. https://living-with-xlh.zencast.website/episodes/living-with-xlh-healthcare-transition 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 preparation, joint transition clinics, transition coordinators, holistic assessments, and XLH‑specific resources.

Topics discussed:

  1. What is healthcare transition?
  2. Why it matters
  3. How gaps in transition can affect young people's health and wellbeing

Links mentioned in this episode: www.xlhaustralia.com

This podcast is hosted by ZenCast.fm

]]> 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 preparation, joint transition clinics, transition coordinators, holistic assessments, and XLH‑specific resources.

Topics discussed:

  1. What is healthcare transition?
  2. Why it matters
  3. How gaps in transition can affect young people's health and wellbeing

Links mentioned in this episode: www.xlhaustralia.com

This podcast is hosted by ZenCast.fm

]]> XLH Australia Inc. false no 1205 full 5 1 5 1 Living with XLH - Paediatric denistry in XLH Living with XLH - Paediatric denistry in XLH Denistry and XLH No No 31bbd7b4-96e6-44df-92c5-83c585b38ff6 Wed, 03 Jun 2026 09:13:58 +0000 XLH Australia Inc. https://living-with-xlh.zencast.website/episodes/paediatric-denistry-in-xlh 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:

  1. enamel
  2. pain/abscesses 3.treatment planning and family support

Links mentioned in this episode:

This podcast is hosted by ZenCast.fm

]]> 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:

  1. enamel
  2. pain/abscesses 3.treatment planning and family support

Links mentioned in this episode:

This podcast is hosted by ZenCast.fm

]]> XLH Australia Inc. false no 1582 full 4 1 4 1 Living with XLH - Movement as Medicine Living with XLH - Movement as Medicine Movement as medicine for XLH patients No No 3c154b64-f40f-4153-bf22-740845a839e6 Fri, 28 Mar 2025 06:16:16 +0000 XLH Australia Inc. https://living-with-xlh.zencast.website/episodes/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:

  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

]]> 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

]]> XLH Australia Inc. false no 3720 full 3 1 3 1 Living with XLH: Three generations Living with XLH: Three generations No No 4c8fed21-630c-4310-919a-cac69b3e74e7 Sun, 22 Dec 2024 00:58:40 +0000 XLH Australia Inc. https://living-with-xlh.zencast.website/episodes/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:

  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

]]> 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

]]> XLH Australia Inc. false no 1360 full 2 1 2 1 Living with XLH: Parenting a child with a rare disease Living with XLH: Parenting a child with a rare disease Exploring the journey of parenting a child with a rare condition. No No 7212f8a0-4049-4e25-ae19-1fbb8c1b03fb Sat, 23 Nov 2024 10:57:24 +0000 XLH Australia Inc. https://living-with-xlh.zencast.website/episodes/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:

  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

]]> 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

]]> XLH Australia Inc. false no 2264 full 1 1 1 1 Living with XLH: Experiences from XLH India Living with XLH: Experiences from XLH India Experiences from XLH India No No 25440f84-d541-43fc-9052-0bc5097f9ab9 Mon, 21 Oct 2024 14:00:00 +0000 XLH Australia Inc. https://living-with-xlh.zencast.website/episodes/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:

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

Links mentioned in this episode:

This podcast is hosted by ZenCast.fm

]]> 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:

This podcast is hosted by ZenCast.fm

]]> XLH Australia Inc. false no 1134