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2203 Philosophy, Genetics & Heredity, 5001 Applied ethics

Abstract:

Neurofibromatosis type 1 (NF1) is an autosomal hereditary disease with an incidence of 1:3000. Our research findings confirm a specific neuropsychological development and a motor delay in these children with borderline or average IQ. Also behaviour and personality development are at risk. Problems such as hyperactivity, impulsivity, immaturity, aggression and social isolation are mentioned. Furthermore, these children show mild physical deformities that might lead to a severely disturbed body image. For more than 5 years, a multidisciplinary NF team has worked with NF1 children at the Centre for Human Genetics in Leuven. From our experience with about 150 NF1 children, we learned that intensive follow-up of school attainment and psychological development are at least as important as a regular check up of the medical evolution. Many primary school NF1 children benefit from a concrete program aiming at the empowerment of specific disturbed cognitive functions: improvement of visual perceptual abilities, of concentration and of executive functions. During puberty and adolescence, many NF1 youngsters benefit from a group program focusing on self-knowledge and on emotional introspection. This will enhance a realistic self concept. Both group treatment programs will be illustrated and discussed.