Confusion, stereotypes, and stigma about the sleep disorder narcolepsy persist to this day. This can lead to a long time to diagnosis and prevent people who think they have narcolepsy from reaching out to a healthcare professional to learn more.
So, what is narcolepsy? Narcolepsy is a rare, chronic, debilitating neurological disorder that affects the way the brain controls sleep-wake cycles.1,2 Narcolepsy affects approximately 165,000 Americans, with one of its main symptoms being excessive daytime sleepiness, or the inability to stay awake and alert during the day.1 Other symptoms may include cataplexy, which is the sudden and brief loss of muscle strength or tone brought on by certain emotions or situations, sleep paralysis, vivid hallucinations when falling asleep or waking up, and disturbed nighttime sleep.3,4 Narcolepsy is estimated to be severely underdiagnosed.5,6 It can take an average of 10 years for people living with narcolepsy to be diagnosed after experiencing their first symptoms.5
Narcolepsy can disrupt everyday life,1 but the symptoms of narcolepsy aren’t always obvious, and may be inaccurately attributed to other medical conditions.3,7 Getting to know narcolepsy means recognizing the symptoms, understanding their impact, and finding resources and support to help manage the disorder.
Dr. Michael J. Thorpy, a world-renowned sleep specialist and narcolepsy expert based in New York, New York, and Jessica, a person living with narcolepsy, conducted a nationwide media tour in conjunction with Your Update TV and Harmony Biosciences to help address misconceptions, learn more about the signs and symptoms, find out what it is like to live with narcolepsy, and discover resources to help those impacted.
1 National Institutes of Health. Narcolepsy. U.S. Department of Health and Human Services. May 2017.
2 Narcolepsy Fact Sheet. NIH Publication No. 17-1637. https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet.
3 American Academy of Sleep Medicine. International Classification of Sleep Disorders. 3rd ed.; 2014.
4 Silber MH, Krahn LE, Olson EJ, Pankratz VS. The epidemiology of narcolepsy in Olmsted County, Minnesota: a population-based study. Sleep. 2002;25(2):197-202.
5 Overeem, Sebastiaan & Reading, Paul & Bassetti, Claudio. (2012). Narcolepsy. Sleep Medicine Clinics. 7. 263–281. 10.1016/j.jsmc.2012.03.013.
6Carter LP, Acebo C, Kim A. Patients' journeys to a narcolepsy diagnosis: a physician survey and retrospective chart review. Postgrad Med. 2014;126(3):216-224.
7 Thorpy M, Morse AM. Reducing the clinical and socioeconomic burden of narcolepsy by earlier diagnosis and effective treatment. Sleep Med Clin. 2017;12(1):61-71.
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