What is Aicardi Syndrome?

Day2DayParenting Child Development, Special Needs Diagnoses

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.

What are the symptoms of Aicardi Syndrome?

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.

Where can I get more information about Aicardi Syndrome?

Aicardi Syndrome Foundation
P.O. Box 3202
St. Charles, IL 60174
Phone 800-374-8518
Website: http://ouraicardilife.org

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

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

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

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

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

National Eye Institute (NEI)
National Institutes of Health, DHHS
31 Center Drive
Rm. 6A32 MSC 2510
Bethesda, MD 20892-2510
Phone 301-496-5248

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