Contacts:
Bob Cloud, Narcolepsy Network, (513) 891-1221
Amy Hunter, Porter Novelli, (212) 601-8126
NARCOLEPSY NETWORK ISSUES NATIONAL "WAKE UP" CALL
-- Advocacy group announces nationwide initiative to boost awareness of narcolepsy --
Fairfield, NJ, June 29, 1999 -- The Narcolepsy Network announced today that it is joining forces with sleep centers nationwide to launch "Wake Up to Narcolepsy," an educational initiative to raise awareness and increase understanding of narcolepsy and its treatment. An estimated 125,000 Americans suffer from narcolepsy, a chronic, lifelong, and often misdiagnosed neurological sleep disorder that results in frequent, irresistible "sleep attacks," regardless of the amount or quality of prior nighttime sleep. Unfortunately, only a small percentage of people with narcolepsy are properly diagnosed. The Wake Up to Narcolepsy initiative is designed to help persons with narcolepsy, as well as their physicians, recognize the symptoms of the condition so that it can be correctly diagnosed and properly treated.
"Most people with narcolepsy are unaware they have a specific, treatable medical condition. Even worse, it can take up to 15 years from symptom onset before they obtain an accurate diagnosis, because their condition is often mistaken for other disorders, such as depression, a metabolic disorder or a learning disability," said Bob Cloud, executive director of the Narcolepsy Network. "Our mission is to help people eliminate this unnecessary delay and get the treatment they need, by empowering them and their physicians with critical information about the condition and offering the support that is essential to coping with this chronic medical disorder."
"Wake Up to Narcolepsy" includes written materials about narcolepsy and excessive daytime sleepiness and a toll-free number, 1-888-41-AWAKE, through which callers can obtain informational brochures. Consumers may also call 1-877-BE-AWAKE to take a verbal test over the phone which may indicate that they have a sleep disorder.
The most common and debilitating symptom of narcolepsy is excessive daytime sleepiness (EDS), which is characterized by "sleep attacks" that produce sudden and irresistible episodes of sleep. These episodes may last a few seconds to more than an hour, sometimes occurring in the middle of conversation or while performing a task. Other symptoms of narcolepsy include: * cataplexy - brief episodes of muscle weakness or paralysis, resulting in knees buckling, head or jaw jerking, weakness in the arms and hands, and even complete collapse; these episodes are induced by strong emotion, such as laughter, anger or surprise
* sleep paralysis - an inability to move that occurs at sleep onset or upon awakening
* hypnagogic hallucinations - vivid, realistic and often frightening dream-like experiences when first falling asleep or upon awakening
* disruptions of normal nighttime sleep
* "automatic behavior" - performing familiar or routine tasks without full awareness or memory of doing it
"The impact of narcolepsy on a person's life can be devastating, but the disorder can often be sufficiently managed with a combination of appropriate medication and lifestyle changes," said Dr. Michael Thorpy, director of the sleep disorders center at Montefiore Medical Center in New York. "It is critical that we communicate this message to people with narcolepsy and the physicians who treat them. It is our hope that this educational initiative will help America 'wake up to narcolepsy,' thereby helping people with the disorder resume active and productive lives."
Headquartered in New Jersey, the Narcolepsy Network is a national, nonprofit organization whose members include people who have narcolepsy (or related sleep disorders), their families and friends, and professionals involved in narcolepsy-related treatment, research and public education. The Narcolepsy Network provides information about narcolepsy, works with local support groups, publishes a quarterly newsletter, holds a national educational conference each year, facilitates professional research, and monitors state and federal laws affecting members' rights.
"Wake Up to Narcolepsy" is being funded by an unrestricted grant from Cephalon, Inc. Headquartered in West Chester, PA, Cephalon is an international biopharmaceutical company dedicated to the discovery, development and marketing of products to treat neurological disorders, sleep disorders and cancer.
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