Rett Syndrome is a neurological condition which most often strikes previously healthy little girls between their first and second birthday, leaving them with multiple disabilities and medical complexities for life.
There are many symptoms of Rett Syndrome. Some signs appear in the first 6-18 months of the child’s life, but some appear between the ages of 1 and 4. Although very rare, boys can also get the disease.
Diagnosing Rett Syndrome is still a clinical process despite the genetic testing which is now available.
A doctor, geneticist or psychologist will observe your child then make a clinical diagnosis based on the symptoms which are present.
If you feel helpless, or powerless or hopeless in the face of a Rett Syndrome diagnosis, please add the person you care for to our UK Rett Syndrome Patient Registry. Signing up means we can contact you directly about clinical trials, the latest research and enables us to make a better case for improved clinical provision and better treatments to become available in the UK.