Care of adolescents with severe learning disability from tuberous sclerosis

Authors

  • Anne P Ferguson MRCP FRCPCH DCCH MB ChB,

    1. Consultant in Community Child Health, Central Manchester Primary Care Trust, Manchester;
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  • Ian A McKinlay OBE FRCP FRCPCH DCH BSc MB ChB,

    1. Senior Lecturer in Child Health, University of Manchester, Mackay Gordon Centre, Royal Manchester Children's Hospital, Pendlebury, Manchester
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  • Ann Hunt BA

    1. Research Coordinator, Tuberous Sclerosis Association, Tuberous Sclerosis Research Group, University of Cambridge, Cambridge, UK.
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* Correspondence to first author at Community Child Health, Central Manchester Primary Care Trust, Newton Heath Health Centre, 2 Old Church Street, Newton Heath, Manchester, M40 2JF UK.

Abstract

A postal study was completed by 138 members of the Tuberous Sclerosis Association for individuals with severe learning disabilities from tuberous sclerosis complex (TSC) (78 males, median 20 years of age; 60 females median 19 years 6 months of age) to investigate the abilities and care needs of these adolescents and young adults. Results were compared with a Salford community survey of young people with severe learning disability (SLD) from a variety of causes (42 males, median 17 years; 29 females, median 17 years 8 months of age). Those with SLD associated with TSC had a higher level of verbal disability and were more dependent for managing toileting and bathing. The young people with TSC were less able to interact socially, showing autistic behaviour. Sexually, they were less aware and less active. Only 20 were thought by their parents to have received sex education.

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