Living with XLH

Living with XLH

By XLH Australia Inc.Medicine
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Living with XLH 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

      4. Links mentioned in this episode:

      www.xlhaustralia.com

      This podcast is hosted by ZenCast.fm

      21 min
    4. Living with XLH - 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. 3.treatment planning and family support

        Links mentioned in this episode:

        • http://xlhaustralia.com

          • This podcast is hosted by ZenCast.fm

          27 min
        • 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

            5. Links mentioned in this episode:

            • www.xlhaustralia.com
            • www.xlhnetwork.org

              • This podcast is hosted by ZenCast.fm

              1 hr 2 min
            • 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

                4. Links mentioned in this episode:

                www.xlhaustralia.com

                This podcast is hosted by ZenCast.fm

                23 min
              4. 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

                  4. Links mentioned in this episode:

                  www.xlhaustralia.com

                  This podcast is hosted by ZenCast.fm

                  38 min
                4. 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

                    4. Links mentioned in this episode:

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

                      • This podcast is hosted by ZenCast.fm

                      19 min

                    About Living with XLH

                    From the publisher's feed

                    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…