National Reyes Syndrome Foundation UK

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Life after Reye's Syndrome or a Reye-Like Disorder


The National Reye's Syndrome Foundation of the UK offers the following information to parents of children who have survived Reye's syndrome or a Reye-like disorder. It is furnished to provide assistance in understanding the potential needs of the survivor and the family and in addition, to provide guidance in securing any necessary services.

It is possible for the Reye's syndrome survivor to recover completely with no after-effects or no apparent changes in the child. There may, however, be recovery with brain damage and disability ranging from very slight motor or learning disabilities to profound brain injury.

The same applies to the survivor of a Reye-like disorder but in addition the child will probably have a specific diagnosis of one of the inherited metabolic disorders which can mimic Reye's syndrome, such as MCADD (Medium-chain acyl-CoA dehydrogenase deficiency), which will be with them life-long. The parents will have been counselled about the effects of this by the paediatrician or specialist metabolic nurse at the hospital where the diagnosis was made. Unlike R.S. there will be implications for diet, specific therapy and prevention of recurrent episodes of illness.

Next review: December 2019