Objective: The study describes the burden of psychosocial risks of mental illnesses and the ways in which children and adolescents with fragile X syndrome (FRX) can be treated.

Method: Data from a sample of 34 patients with FRX younger than 18 years stemming from a prospective multicenter (n = 11) registry study (EXPLAIN) were analyzed with regard to psychosocial burden and Treatment.

Results: One third of all participants reported having relatives who suffer from FRX. The majority of participants were suffering themselves from one kind or another mental or neurological problems. Younger participants (< 14 years) tended to suffer from atactic disorders, epileptic seizures, and autistic symptoms. These disorders were usually treated by psychotropic drugs supplemented by logopedic therapies and occupational therapies (more than once a month). In our sample, 96.3 % of the younger patients and more than 57.1 % of the older patients were still living with their parents.

Conclusions: Patients with FRX often suffer from additional neurological and mental disorders. For that reason, they should be diagnosed and treated early on.

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http://dx.doi.org/10.1024/1422-4917/a000466DOI Listing

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