NARCOLEPSY

Narcolepsy is a chronic neurologic brain disorder caused by the brain’s inability to regulate sleep-wake cycles normally. Narcolepsy is under-recognized and under-diagnosed, with approximately one out of every 2,000 people experiencing this disease, although the exact prevalence is unknown and may, in fact, be higher.[1] Generally, narcolepsy is not definitively diagnosed until 10 to 15 years after the first symptoms appear.[2] Although narcolepsy is thought to affect between 125,000 and 200,000 Americans, only about 50,000 are diagnosed.[2]

All patients with narcolepsy experience excessive daytime sleepiness (EDS),[3] which is a chronic, pervasive sleepiness that triggers sudden irresistible and overwhelming urges to sleep (inadvertent naps or sleep attacks).[4] EDS is the hallmark symptom of narcolepsy, and by definition, narcolepsy can only be diagnosed in the presence of EDS.  60 – 100% of patients with narcolepsy experience cataplexy, or weak or paralyzed muscle attacks, which can vary in severity.[1],[5] These symptoms can lead to a variety of complications, such as limitations on education and employment opportunities, driving or machine accidents, difficulties at work resulting in disability, forced retirement or job dismissal and depression.

More information is available through the following organizations:

American Academy of Sleep Medicine
www.aasmnet.org
One Westbrook Corporate Center, Suite 920
Westchester, IL 60154
Phone: 708-492-0930
Fax: 708-492-0943

Narcolepsy Network, Inc.
www.narcolepsynetwork.org
79A Main Street
North Kingstown, RI 02852
Phone: 888-292-6522
Fax: 401-633-6567
Email: narnet@narcolepsynetwork.org

National Sleep Foundation
www.sleepfoundation.org
1522 K Street NW, Suite 500
Washington, DC 20005
Phone: 202-347-3471

NIH Neurological Institute
www.ninds.nih.gov
P.O. Box 5801
Bethesda, MD 20824
Phone: 800-352-9424 or 301-496-5751
TTY (for people using adaptive equipment): 301-468-5981

National Organization for Rare Disorders (NORD)
www.rarediseases.org
55 Kenosia Avenue
P.O. Box 1968
Danbury, CT 06813-1968
Phone: 800-999-6673

Wake Up Narcolepsy
www.wakeupnarcolepsy.com
PO Box 60293
Worcester, MA 01606
Phone:  978-751-DOZE (3693)


1Narcolepsy Fact Sheet. National Institute of Neurological Disorders and Stroke Website. http://www.ninds.nih.gov/disorders/narcolepsy/detail_narcolepsy.htm. Accessed March 17, 2011.

2 Narcolepsy. American Sleep Association Website. http://sleepassociation.org/index.php?p=aboutnarcolepsy. Accessed March 17, 2011.
3 Bassetti and Aldrich. Neurol Clin. 1996; 14:545.
4 Narcolepsy. National Sleep Foundation. http://www.sleepfoundation.org. Accessed March 17, 2011.
5 Mahmood and Black. Curr Treat Options Neurol. 2005; 7:363.