PODCAST · health
Living with XLH
by XLH Australia Inc.
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
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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...
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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: enamel pain/abscesses 3.treatment planning and family support Links mentioned in this episode: http://xlhaustralia.com This...
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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...
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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…
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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...
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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...
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ABOUT THIS SHOW
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.
HOSTED BY
XLH Australia Inc.
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Frequently Asked Questions
How many episodes does Living with XLH have?
Living with XLH currently has 6 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is Living with XLH 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...
How often does Living with XLH release new episodes?
Living with XLH has 6 episodes. Check the episode list to see recent publication dates and frequency.
Where can I listen to Living with XLH?
You can listen to Living with XLH on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts Living with XLH?
Living with XLH is created and hosted by XLH Australia Inc..
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