As a parent of a child with Kleefstra syndrome, one of my greatest fears is the future, having read about the syndrome and the psychiatric issues that may accompany it. There is a large spectrum of Kleefstra syndrome, both physically, cognitively and with regards to medical/psychiatric complications. As it is so rare, information regarding mental health is scanty and difficult to access. I have compiled this leaflet with the help of Dr Karlijn Vermeulen, psychiatrist at the Radboud University Medical Centre in the Netherlands, who has studied the psychiatric aspects of Kleefstra syndrome, in order to help parents understand what may happen in the future and hopefully to feel more in control in accessing help from health care professionals. None of us can predict if our children will be affected by any of the conditions in this guide, but we can educate and empower ourselves by being prepared.

– Dr. Miranda Coberman

Dr. Miranda Coberman (left)

A useful guide on mental health in Kleefstra syndrome has been written by Dr Miranda Coberman & Dr. Karlijn Vermeulen.  The guide was kindly published by Unique.

The guide is available here in PDF format:

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