Aicardi Syndrome
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What is Aicardi Syndrome?Is there any treatment?What is the prognosis?What research is being done?OrganizationsWhat 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.
Select this link
to view a list of studies currently seeking patients.
Organizations
Aicardi Syndrome Foundation
P.O. Box 3202
St. Charles,
IL
60174
http://www.aicardisyndrome.org
Tel: 800-374-8518
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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
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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
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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
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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
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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
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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.
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Last updated February 08, 2007
