What is Aicardi Syndrome?
Aicardi Syndrome is a rare genetic disorder characterized by the partial or complete absence of the structure that links the two hemispheres of the brain, the corpus callosum. The disorder affects only girls. Onset of Aicardi Syndrome generally begins between the ages of 3 and 5 months with infantile spasms, a type of childhood seizure. Symptoms include seizures, mental retardation and lesions on the retina of the eye that are specific to the disorder. Aicardi Syndrome may be associated with other brain defects such as a smaller than average brain and cavities or gaps in the brain filled with cerebrospinal fluid.

Is there any treatment?
There is no cure for Aicardi Syndrome nor is there a standard course of treatment. Treatment generally involves medical management of seizures and programs to help parents and the child cope with developmental delays.

What is the prognosis?
The prognosis for girls with Aicardi Syndrome varies according to the severity of their symptoms.

What research is being done?
The NINDS supports and conducts research on neurogenetic disorders such as Aicardi Syndrome. The goals of this research are to locate and understand the genes involved and to develop techniques to diagnose, treat, prevent, and ultimately cure the disorder.

Aicardi Syndrome Foundation
P.O. Box 3202
St. Charles, IL   60174
http://www.aicardisyndrome.org
Tel: 800-374-8518

Aicardi Syndrome Newsletter, Inc.
1510 Polo Fields Court
Louisville, KY  40245
aicnews@aol.com
http://www.aicardisyndrome.org
Tel: 502-244-9152

The Arc of the United States
1010 Wayne Avenue, Suite 650
Silver Spring, MD 20910
Info@thearc.org
http://www.thearc.org
Tel: 301-565-3842
Fax: 301-565-3843 or -5342

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY  10605
askus@marchofdimes.com
http://www.marchofdimes.com
Tel: 914-428-7100 888-MODIMES (663-4637)
Fax: 914-428-8203

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT   06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291

National Eye Institute (NEI)
National Institutes of Health, DHHS
31 Center Drive, Rm. 6A32 MSC 2510
Bethesda, MD   20892-2510
2020@nei.nih.gov
http://www.nei.nih.gov
Tel: 301-496-5248

National Institute of Mental Health (NIMH)
National Institutes of Health, DHHS
6001 Executive Blvd. Rm. 8184, MSC 9663
Bethesda, MD   20892-9663
nimhinfo@nih.gov
http://www.nimh.nih.gov
Tel: 301-443-4513/866-615-NIMH (-6464) 301-443-8431 (TTY)
Fax: 301-443-4279

Source: National Institutes of Health; The National Institute of Neurological Disorders and Stroke

This information is provided by the Cleveland Clinic and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. For additional written health information, please contact the Health Information Center at the Cleveland Clinic (216) 444-3771 or toll-free (800) 223-2273 extension 43771 or visit www.clevelandclinic.org/health/.

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