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Kleine-Levin Syndrome

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Kleine-Levin 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

  • Kleine-Levin Hibernation Syndrome
  • Familial Hibernation Syndrome
  • Periodic Somnolence and Morbid Hunger

Disorder Subdivisions

  • None

General Discussion

Kleine-Levin syndrome is a rare disorder characterized by the need for excessive amounts of sleep (hypersomnolence), (i.e., up to 20 hours a day); excessive food intake (compulsive hyperphagia); and behavioral changes such as an abnormally uninhibited sexual drive. The disorder primarily affects adolescent males. When awake, affected individuals may exhibit irritability, lack of energy (lethargy), and/or lack of emotions (apathy). They may also appear confused (disoriented) and experience hallucinations. Symptoms of Kleine-Levin syndrome are cyclical. An affected individual may go for weeks or months without experiencing symptoms. When present, symptoms may persist for days to weeks. In some cases, the symptoms associated with Kleine-Levin syndrome eventually disappear with advancing age. However, episodes may recur later during life.

The exact cause of Kleine-Levin syndrome is not known. However, researchers believe that in some cases, hereditary factors may cause some individuals to have a genetic predisposition to developing the disorder. It is thought that symptoms of Kleine-Levin syndrome may be related to malfunction of the portion of the brain that helps to regulate functions such as sleep, appetite, and body temperature (hypothalamus). Some researchers speculate that Kleine-Levin syndrome may be an autoimmune disorder.

Resources

National Sleep Foundation
1010 N. Glebe Road
Suite 310
Arlington, VA 22201
Tel: (703)243-1697
Email: nsf@sleepfoundation.org
Internet: http://www.sleepfoundation.org

American Sleep Association
1610 14th Street NW
Suite 300
Rochester, MN 55901
Tel: (507)287-6006
Fax: (507)287-6008
Email: asda@millcomm.com
Internet: http://www.sleepassociation.org/

National Mental Health Consumers' Self-Help Clearinghouse
1211 Chestnut Street
Suite 1207
Philadelphia, PA 19107-6312
USA
Tel: (215)751-1810
Fax: (215)636-6312
Tel: (800)553-4539
Email: info@mhselfhelp.org
Internet: http://www.mhselfhelp.org

Mental Health America
2000 N. Beauregard Street, 6th Floor
Alexandria, VA 22314-2971
USA
Tel: (703)684-7722
Fax: (703)684-5968
Tel: (800)969-6642
TDD: (800)433-5959
Email: infoctr@mentalhealthamerica.net
Internet: http://www.mentalhealthamerica.net/

NIH/National Institute of Mental Health
Health Science Writing, Press and Dissemination Branch
6001 Executive Boulevard
Room 8184, MSC 9663
Bethesda, MD 20892-9663
Tel: (301)443-4513
Fax: (301)443-4279
Tel: (866)615-6464
TDD: (301)443-8431
Email: nimhinfo@nih.gov
Internet: http://www.nimh.nih.gov/index.shtml

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
Internet: http://www.ninds.nih.gov/

Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311
TDD: (888)205-3223
Internet: http://rarediseases.info.nih.gov/GARD/

Kleine-Levin Syndrome Foundation
PO Box 5382
San Jose, CA 95150-5382
Tel: (408)265-1099
Fax: (408)269-2131
Email: facts@klsfoundation.org
Internet: http://www.klsfoundation.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:  4/6/2007
Copyright  1996, 1997, 2001, 2003, 2005, 2007 National Organization for Rare Disorders, Inc.

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