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.

Following are two documents: Facts About Narcolepsy and Backgrounder on Narcolepsy

The Facts About Narcolepsy

• Narcolepsy is a chronic, lifelong neurological sleep disorder, the exact cause of which is unknown.

• Symptoms of narcolepsy can appear all at once, or develop slowly over many years. While not all patients suffer from each one, symptoms of narcolepsy include:

  • Excessive daytime sleepiness (EDS): Irresistible sleep attacks throughout the day, regardless of the amount or quality of prior nighttime sleep. EDS affects 100% of narcolepsy patients and is usually the first symptom to appear.

  • 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. Cataplexy affects approximately 60 to 90 percent of the narcolepsy population.

  • Sleep paralysis: Inability to move at sleep onset or upon awakening. Sleep paralysis occurs in 60 percent of people with narcolepsy.

  • Hypnagogic hallucinations: Vivid dreamlike experiences that occur at onset of sleep or upon awakening that; the experiences are difficult to distinguish from reality and are often like a nightmare, involving images or sounds of strange animals or prowlers. These hallucinations occur in 30 to 60 percent of the narcolepsy population.

  • Automatic behavior: Familiar, routine or boring tasks performed without full conscious awareness, which may not be recalled later. Automatic behavior occurs in up to 80 percent of people with narcolepsy.

  • Nighttime sleep disruption: Disturbed sleep caused by abnormalities of rapid-eye-movement (REM) sleep. These disruptions occur in half of patients with narcolepsy.

• An estimated 125,000 Americans are afflicted with narcolepsy; most (more than two-thirds of the narcolepsy population) remain undiagnosed and receive no medical treatment.

• Narcolepsy affects both sexes equally and symptoms most commonly appear between the ages of 15 to 25, although symptoms can begin as early as age 5 or even much later in life.

• Physicians often mistake the symptoms for other disorders or as a side effect of medication. As a result of misdiagnosis and the general unawareness of symptoms, the average length of time between onset and diagnosis of narcolepsy is 15 years; the average number of doctors seen is five.

• Narcolepsy can greatly impair a person's ability to perform basic daily activities, resulting in profound personal and professional consequences that significantly impact quality of life.

Narcolepsy Backgrounder

According to the National Commission on Sleep Disorders Research, approximately 40 million Americans suffer from chronic disorders of sleep and wakefulness, such as narcolepsy, sleep apnea and different forms of insomnia. These disorders have serious economic and social consequences for patients, their families and society. In fact, it is estimated that sleeping disorders costs $70 billion annually in lost productivity, medical bills and industrial accidents in the United States.

One of the most debilitating of these sleep disorders is narcolepsy, a chronic, lifelong sleep disorder afflicting approximately 125,000 Americans. It affects both sexes equally and most commonly begins in young adulthood between the ages of 15 to 25, although symptoms can begin as early as age 5 or even much later in life. Often, 10 to 15 years may pass between onset and proper diagnosis of the disorder. Although known to be a neurological disorder with a genetic component, the exact physical cause of narcolepsy has not yet been discovered.

Narcolepsy can be a devastating disorder that greatly hampers a person's ability to perform basic daily activities such as working, studying, and even relating with family or friends. As a result, people with narcolepsy often experience additional disruptive problems, including loss of employment, social withdrawal, broken marriages, low self-esteem and depression.

Symptoms
Symptoms of narcolepsy can appear all at once or develop slowly over many years. The most common symptom of narcolepsy is excessive daytime sleepiness, which is characterized by sudden and often irresistible sleep attacks that can last from a few seconds to more than an hour. These attacks can take place any time, such as during conversation or while eating or driving, and can reoccur frequently during the day, even if one obtains a normal amount of sleep. As a result, narcolepsy significantly impacts a person's quality of life.

People with narcolepsy may also experience cataplexy, brief episodes of muscle weakness or paralysis, resulting in knees buckling, head nodding, weakness in the arms and hands, and even complete collapse; it affects between 60 and 90 percent of patients with narcolepsy. Cataplexy is usually triggered by strong emotions such as laughter, surprise, elation or anger. As a result, patients with cataplexy often try to avoid or suppress their normal emotions to prevent a cataplectic attack.

Other common symptoms of narcolepsy include paralysis upon falling asleep or awakening (sleep paralysis), vivid hallucinations that occur at onset of sleep or upon awakening (hypnagogic hallucinations) and disrupted nighttime sleep.

Diagnosing Narcolepsy
Diagnosing narcolepsy has proven difficult and costly. The National Commission on Sleep Disorders Research reports that the average length of time between onset and diagnosis of narcolepsy is 15 years; the average number of doctors seen is five. Patients with narcolepsy may not suspect a medical disorder and usually do not seek help until symptoms become quite severe. In addition, physicians often misdiagnose narcolepsy, mistaking the symptoms as indicative of other disorders, such as depression, a metabolic disorder, learning disability, or a side effect of medication.

The first step in diagnosing narcolepsy is obtaining a complete medical history of the patient and completing a physical examination. Physicians also use a nocturnal polysomnogram, an overnight sleep laboratory measure used to capture brain waves and eye movements to determine disrupted sleep patterns.

Narcolepsy can be confirmed in a patient by the Multiple Sleep Latency Test (MSLT). This test, consisting of four or five monitored 20-minute nap periods occurring every two hours, assesses two major components of narcolepsy: hypersomnolence (excessive sleepiness) and REM-onset sleep (abrupt onset of the period of sleep characterized by rapid eye movements [REM] due to intense brain activity). If the patient falls asleep within eight minutes (A normal healthy adult who is not sleep deprived will fall asleep between 10 and 15 minutes during the MSLT.) and goes into REM sleep quickly within 20 minutes during two out of the four or five nap periods, a diagnosis of narcolepsy is confirmed.

Two other standardized measures may also be used to supplement a diagnosis of narcolepsy: the Maintenance of Wakefulness Test (MWT), an objective test of a person's ability to stay awake over time, and the Epworth Sleepiness Scale (ESS), a subjective measure in which patients are asked to rate their likelihood of falling asleep during different, normal daily activities.

Treating the Disorder
There is no cure for narcolepsy; however, with the help of lifestyle changes and medication, patients are often able to control their symptoms and engage in normal life activities.

Lifestyle Changes
Narcolepsy is a lifelong disorder for which long-term support is needed. For example, physician counseling is essential for enhancing patients' understanding of the disorder and advising them about lifestyle decisions. Information and support are also available from narcolepsy patient organizations, locally and nationally.

Good sleep hygiene is also a critical element of a total narcolepsy management program. Most patients report that their symptoms are better controlled if they maintain a regular sleep schedule that includes 7.5 to 8 hours of sleep at night. Many clinicians also recommend naps at various intervals during the day as part of a patient's treatment plan.

Medication
The majority of people with narcolepsy require medications to treat the symptoms of the disorder and lessen their interference with a person's day-to-day functioning. There are a variety of medications available that can help people with narcolepsy resume active and productive lives. Historically, the excessive daytime sleepiness of narcolepsy has been treated with central nervous system (CNS) stimulants, such as amphetamines, that stimulate the brain through the release of dopamine and other catecholamines, such as norepinephrine. Cataplexy and the other primary symptoms are usually treated with antidepressants.

Recently, a new non-amphetamine drug was approved by the FDA for excessive daytime sleepiness associated with narcolepsy and there has been great excitement in the sleep community about the potential of this new treatment. Another medication is currently under clinical investigation to control the other symptoms associated with narcolepsy, including cataplexy, hypnagogic hallucinations and sleep paralysis.

For more information about narcolepsy and its treatment, people should consult their physicians or see a sleep specialist.