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Steve talks about his experiences with his sons Tom and Robin, who both have fragile X syndrome

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Key Fact
Everyone with fragile X syndrome is an individual

Key Facts

The prevalence of fragile X syndrome differs between males (1 in 4000) and females (1 in 8000).

Fragile X syndrome arises from a genetic mutation in a gene on the X chromosome. 

80% of individuals with fragile X syndrome will have one or more of the physical features of the syndrome, but the presence of these features varies with age and sex.

Children with fragile X syndrome have relative strengths in vocabulary capacity, processing of simultaneous information, and long-term memory.

Difficulties are seen in verbal short-term memory, sequential processing of information, and executive functioning. 

Females with fragile X syndrome have a unique profile of strengths and weaknesses.

The link between fragile X syndrome and Autism Spectrum Disorder (ASD) is complex.  Estimates of ASD range from 21-80%. 

Individuals with fragile X syndrome often show repetitive behaviour.

Some males with fragile X syndrome may only experience mild difficulties with language and communication, whereas others may not develop any spoken language.

Social anxiety is very common in fragile X syndrome, with approximately 75% of males displaying excessive shyness and anxiety.

Around half of all individuals with fragile X syndrome have clinically significant sleep difficulties. 

It is estimated that many individuals with fragile X syndrome show impulsive and overactive behaviour. 

The Fragile X Society is a UK based charity that provides support to families and individuals with fragile X syndrome.


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