Fragile X syndrome: A parent's perspective
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
This program is supported by the Fragile X Association of Australia.