<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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