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NINDS Rett Syndrome Information Page

Condensed from Rett Syndrome Fact Sheet

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What is Rett Syndrome?

 Rett syndrome is a childhood neurodevelopmental disorder that affects females almost exclusively.  The child generally appears to grow and develop normally, before symptoms begin.  Loss of muscle tone is usually the first symptom. Other early symptoms may include a slowing of development, problems crawling or walking, and diminished eye contact. As the syndrome progresses, a child will lose purposeful use of her hands and the ability to speak. Compulsive hand movements such as wringing and washing follow the loss of functional use of the hands. The inability to perform motor functions is perhaps the most severely disabling feature of Rett syndrome, interfering with every body movement, including eye gaze and speech.

Is there any treatment?

There is no cure for Rett syndrome. Treatment for the disorder is symptomatic, focusing on the management of symptoms, and supportive.  Medication may be needed for breathing irregularities and motor difficulties, and antiepileptic drugs may be used to control seizures.  Occupational therapy, physiotherapy, and hydrotherapy may prolong mobility. Some children may require special equipment and aids such as braces to arrest scoliosis, splints to modify hand movements, and nutritional programs to help them maintain adequate weight. Special academic, social, vocational, and support services may be required in some cases.

What is the prognosis?

The course of Rett syndrome, including the age of onset and the severity of symptoms, varies from child to child.  Despite the difficulties with symptoms, most individuals with Rett syndrome continue to live well into middle age and beyond. Because the disorder is rare, very little is known about long-term prognosis and life expectancy.

What research is being done?

The National Institute of Neurological Disorders and Stroke (NINDS) and other institutes of the National Institutes of Health (NIH) conduct research related to Rett syndrome in laboratories at the NIH, and also support additional Rett syndrome research through grants to major medical institutions across the country.  The discovery of the Rett syndrome gene in 1999 provides a basis for further genetic studies.  Understanding the cause of this disorder is necessary for developing new therapies to manage specific symptoms, as well as for providing better methods of diagnosis.

NIH Patient Recruitment for Rett Syndrome Clinical Trials


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International Rett Syndrome Foundation
4600 Devitt Drive
Cincinnati, OH 45246
Tel: 513-874-1298 800-818-7388

Easter Seals
233 South Wacker Drive
Suite 2400
Chicago, IL 60606
Tel: 312-726-6200 800-221-6827
Fax: 312-726-1494

National Institute of Child Health and Human Development (NICHD)
National Institutes of Health, DHHS
31 Center Drive, Rm. 2A32 MSC 2425
Bethesda, MD 20892-2425
Tel: 301-496-5133
Fax: 301-496-7101

National Institute of Mental Health (NIMH)
National Institutes of Health, DHHS
6001 Executive Blvd. Rm. 8184, MSC 9663
Bethesda, MD 20892-9663
Tel: 301-443-4513/866-415-8051 301-443-8431 (TTY)
Fax: 301-443-4279

Genetic and Rare Diseases Information Center (GARD)
National Institutes of Health, DHHS
P.O. Box 8126
Gaithersburg, MD 20898-8126
Tel: 888-205-2311

Rett Syndrome Research Trust
67 Under Cliff Road
Trumbull, CT 06611
Tel: 203-445-0041

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Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892

NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.

All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.

Last Modified July 27, 2015