NarcolepsyNetwork

NORTH KINGSTOWN, RHODE ISLAND (March 7, 2009) – Narcolepsy Network,
Inc. announced today that it has designated Saturday, March 7, 2009 as Suddenly Sleepy
Saturday – A Day for Narcolepsy Awareness. This date marks the 6th day of National
Sleep Awareness Week, a week during which the National Sleep Foundation and its
partner organizations sponsor a variety of events to raise awareness of the importance of
sleep to good health as well as the prevalence of undiagnosed sleep disorders.

This year Narcolepsy Network’s Trustees, staff and member volunteers will raise public
awareness of narcolepsy by requesting their local radio stations air 30- and 60-second
Public Service Announcements on Suddenly Sleepy Saturday. In addition, many
volunteers are working with their state and/or local governments to have March 8
proclaimed Suddenly Sleepy Saturday – A Day for Narcolepsy Awareness. Other local
volunteer efforts will include distribution of brochures and meetings with school
personnel Narcolepsy is a life-long neurological sleep disorder, with symptoms usually presenting
in adolescence, although this disorder may develop earlier or later in life. The hallmark
symptom of narcolepsy is excessive daytime sleepiness.

Other symptoms include
cataplexy – a loss of muscle tone triggered by sudden emotional stimuli such as hearing
the punch line of a joke or being suddenly frightened or angered; hallucinations – dreams
that seem real, occurring at sleep onset and/or while waking, and sleep paralysis, during
which the individual is awake but cannot move. Narcolepsy may also cause frequent
nighttime awakenings, vivid dreams and automatic behavior. Individuals with narcolepsy
experience some or all of these symptoms day after day in spite of sufficient sleep at
night.

Diagnosis of narcolepsy is usually delayed until the individual’s second or third decade,
with an average of 10 years from the onset of symptoms to diagnosis. Narcolepsy is
estimated to affect 125,000 – 200,000 Americans with as few as 25% diagnosed. As many
as 150,000 men, women and children in the U.S. struggle with the chronic inability to
stay awake during the day. Without treatment, educational achievement and job
performance suffer along with self-esteem, social lives and relationships. An early
diagnosis and the availability of newer medications to relieve the symptoms of
narcolepsy greatly improve one’s functional ability and chances for success.

Narcolepsy Network encourages all Americans who regularly experience difficulty
staying awake during the day to consult a physician that is board-certified in Sleep
Medicine. These physicians can be found at Sleep Disorders Centers throughout the
country. To locate a Sleep Disorders Center nearest you, visit www.sleepcenters.org.
Narcolepsy is diagnosed by means of an overnight sleep evaluation (polysomnogram) in
which brain waves, respiration, eye movements, muscle activity, etc. are monitored and
recorded, followed by a daytime nap test called a Multiple Sleep Latency Test.
Narcolepsy involves a disruption of the REM or dream stage of sleep, with individuals
entering REM within minutes of falling asleep. A healthy sleeper reaches the REM stage
approximately 90 minutes after sleep onset.

Narcolepsy Network especially encourages school nurses, teachers and counselors at all
levels – primary, secondary and post-secondary – and all others who regularly interact
with adolescents and young adults – to learn more about narcolepsy. These groups are in
a unique position to recognize the symptoms of narcolepsy when they first present. Early
recognition of symptoms will facilitate earlier diagnosis and treatment, sparing affected
individuals years of frustration, low self-esteem and under-achievement.

Narcolepsy Network is a non-profit patient support organization that advocates for all
persons with narcolepsy and assists our member volunteers to spread awareness in their
local communities. We promote public awareness of narcolepsy and educate, inform and
provide emotional support to individuals with narcolepsy, their family members, friends
and medical providers.

Groups wishing to obtain information or arrange for a
speaker can email us or call our office at 1-888-292-6522.
National Contact: Eveline V. Honig MD MPH
(941) 741-5680
ehonig@narcolepsynetwork.org

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