Rett syndrome: parents' views about specific symptoms

The International Rett Syndrome Association was founded in the spring of 1984 following the diagnosis of 10-year-old Stacie Hunter. The group began as an attempt to locate other parents of children who had shared the same long and tedious search for a diagnosis. The organization participated in a conference with the John F Kennedy Institute for Handicapped Children in January of 1985, where Dr Rett examined and confirmed 39 girls suspected to have the disorder. It was the first time ever that such a large gathering of Rett syndrome patients was held. The following November, 1985 brought an international team of 116 experts in the study of Rett syndrome to the Kennedy Institute for scientific investigation, at which time the International Rett Syndrome Association again sponsored a parent conference which brought together 70 affected girls and their families. The aims of the International Rett Syndrome Association are to 1) collect and disseminate accurate and objective information regarding the cause, identification, treatment, prediction, prognosis, analysis and prevention of Rett syndrome; 2) encourage research into Rett syndrome; 3) assist in identifying persons with Rett syndrome; 4) conduct other activities aimed at the prevention, treatment or eradication of Rett syndrome. Rett syndrome is a devastating disorder that affects the entire family for its lifetime. Parents develop many coping strategies in learning to live with Rett syndrome, and are often creative in their approaches. This paper addresses the many questions that parents often ask in their search to understand Rett syndrome and to make a better life for their children.(ABSTRACT TRUNCATED AT 250 WORDS)