<p>Parents describe their children with Kleefstra syndrome</p>

Parents describe their children with Kleefstra syndrome

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Key Fact
Everyone with Kleefstra syndrome is an individual

Key Facts about Kleefstra Syndrome


Kleefstra syndrome is named after the clinical geneticist Dr Tjitske Kleefstra.

Kleefstra syndrome is caused by a missing piece of information (deletion) on the long arm of chromosome 9

The early signs of Kleefstra syndrome vary between individuals

Most individuals with Kleefstra syndrome will have a moderate level of intellectual disability

Over half of individuals with Kleefstra syndrome are born with structural heart defects

Motor development is often delayed in Kleefstra syndrome

Many children with Kleefstra syndrome are reported to show ASD characteristics

Children with Kleefstra syndrome often prefer to be with adults rather than children

Some children with Kleefstra syndrome show problematic sleep patterns, which change with age

Mood swings tend to increase during puberty for children with Kleefstra syndrome

Speech skills may improve with time in some individuals 




The information on this website was developed in collaboration with www.kleefstrasyndrome.org. This is the parental support group for Kleefstra, a well-developed community with an active facebook group and parent support conference. Please visit their website for further information and to get in touch with families of individuals with Kleefstra syndrome. 


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