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Locked In Syndrome

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Locked In Syndrome is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

  • cerebromedullospinal disconnection
  • de-efferented state
  • pseudocoma

Disorder Subdivisions

  • None

General Discussion

Locked-in syndrome is a rare neurological disorder in which there is complete paralysis of all voluntary muscles except for the ones that control the movements of the eyes. Individuals with locked-in syndrome are conscious and awake, but have no ability to produce movements (outside of eye movement) or to speak (aphonia). Cognitive function is usually unaffected. Communication is possible through eye movements or blinking. Locked-in syndrome is caused by damaged to the pons, a part of the brainstem that contains nerve fibers that relay information to other areas of the brain.

Resources

National Rehabilitation Information Center
8201 Corporate Drive
Suite 600
Landover, MD 20785
United States
Tel: (301)459-5900
Fax: (301)459-4263
Tel: (800)346-2742
TDD: (301)459-5984
Email: naricinfo@heitechservices.com
Internet: http://www.naric.com

National Stroke Association
9707 E. Easter Lane
Suite B
Centennial, CO 80112
USA
Tel: (303)649-9299
Fax: (303)649-1328
Tel: (800)787-6537
Email: info@stroke.org
Internet: http://www.stroke.org

NIH/National Institute of Neurological Disorders and Stroke
P.O. Box 5801
Bethesda, MD 20824
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
TDD: (301)468-5981
Email: me20t@nih.gov
Internet: http://www.ninds.nih.gov/

United States Society for Augmentative and Alternative Communication
100 E. Pennsylvania Avenue, Courtyard
Towson, MD 21286
USA
Tel: (877)887-7222
Email: info@ussaac.org
Internet: http://www.ussaac.org/

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org

Last Updated:  8/12/2010
Copyright  1988, 1989, 1997, 2000, 2010 National Organization for Rare Disorders, Inc.

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