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About Montefiore's Narcolepsy Institute

The Narcolepsy Institute, at Montefiore Medical Center, provides support services to individuals who have narcolepsy and their families in New York City. The program is funded by a Family Support Service grant from New York State OMRDD. Free services are provided for people whose narcolepsy qualifies as a developmental disability. Narcolepsy is a developmental disability if it occurs before the age of 22 and presents difficulties in school, work, mobility, self-care, other daily life activities and economic self-sufficiency.

Narcolepsy is a neurological condition, characterized by an irresistible urge to sleep during the day, vivid dreams, cataplexy (muscular weakness with strong emotions), sleep paralysis and disturbed nighttime sleep. Intermittent episodes of daytime sleepiness may occur during a conversation, while reading, watching television, driving or riding in a subway or bus. The symptoms are not relieved by adequate sleep at night, but can be controlled with medication and structured sleep schedules, and other non-pharmacological approaches. Other common symptoms reported by many patients are muscular weakness, fatigue, inability to concentrate, problems with memory and a low level of motivation.

The age of onset is adolescence but the condition may be misdiagnosed as attention deficit disorder, depression, epilepsy or a learning disability. Often a youngster may be labeled as "lazy" or "unmotivated" because of his/her tendency to sleep during the daytime. Recent studies document the effect of narcolepsy on education, employment, and marital and social relationships of patients. Persons with narcolepsy manifest high levels of depressive episodes, anxiety, lethargy, and social introversion. SERVICES PROVIDED The Narcolepsy Institute provides screening, counseling, crisis intervention, and advocacy for affected individuals and their families. Support groups are conducted under the guidance of a counselor. The thrust of the counseling service is towards providing individuals and their families with information about narcolepsy and developing skills necessary to cope with the social impact of this condition on their lives and thus improving the quality of their lives. Non-pharmacological approaches to management including, behavioral modification and nutritional counseling are provided. Following an initial interview, an appropriate referral is made for medical diagnosis and treatment, entitlements, housing, or employment as needed in individual cases. In addition to the services at Montefiore Medical Center, support groups are conducted by appointment in Manhattan, Brooklyn, Queens and Staten Island.

Melta Goswami, MPH, Ph.D., is the director of this institute (Tel: 1-718-920-6799). It should be noted that about one-half of America's adult drivers - 51 percent or approximately 100 million people - are on the roads feeling sleepy while they are driving. Nearly two in 10 drivers - 17 percent or approximately 14 million people - say they have actually fallen asleep at the wheel in the past year. These are among the findings in the National Sleep Foundation's (NSF) 2002 Sleep in America poll released today at the National Summit to Prevent Drowsy Driving in Washington, DC. A major goal of the two-day event, spearheaded by NSF, is to make drowsy driving prevention a national public health and safety priority.

This marks the fifth consecutive year that approximately one-half or more of adult drivers admit to driving while drowsy or sleepy in NSF's annual poll. One percent of the respondents say they had an accident because they dozed off or were too tired to drive, a figure that has remained consistent in the polls.

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