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Fragile X Syndrome: A Parent's Perspective

  • : Sydney Olympic Park NSW 2127

Fragile X syndrome is a genetic disorder that can lead to intellectual disability. Mike Tozer and Dr Cynthia Roberts share their experiences of having children with this condition, and explore how health professionals can play a supporting role.
This video was recorded on 19 January 2017.

 

Questions asked in the video
  • What did you notice about your son Josiah's development before receiving a diagnosis of fragile X syndrome? 0:08
  • What concerns did you and your family have during the diagnostic process? 1:18
  • What would you say to healthcare professionals when faced with a young child with developmental delay? 2:04
  • Now that your son Daniel is in his 20s, what role does your GP play in managing his health? 3:27
  • How does Daniel communicate his needs, including any health issues? 4:37
  • What were the main challenges when your son transferred from paediatric to adult health services? 5:50
  • What is your message to GPs who have patients with fragile X syndrome? 7:05
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    Fragile X Syndrome: A Parent's Perspective
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