Narcolepsy is often thought of as an adult sleep disorder.7 However, symptoms most commonly start in childhood or adolescence. 7 While the five major symptoms of narcolepsy are the same for children and adults, they can present differently.1,8 Misdiagnosis is common, and people with narcolepsy can experience symptoms for more than a decade before getting the right diagnosis. 6,7
DID YOU KNOW?
- Narcolepsy is not as uncommon as you may think. Approximately 1 in 2,000 people have narcolepsy and it is estimated about half of people with narcolepsy remain undiagnosed 1
- More than 50% of people with narcolepsy say their symptoms started before age 18 6
- Everyone with narcolepsy has EDS, but not everyone describes it in the same way. 2,3,8
- On average, patients had six doctor visits before receiving a narcolepsy diagnosis5
1 Ahmed I, Thorpy M. Clinical features, diagnosis and treatment of narcolepsy. Clin Chest Med. 2010;31(2):371-381.
2 Ahmed IM, Thorpy MJ. Clinical evaluation of the patient with excessive sleepiness. In: Thorpy MJ, Billiard M, eds.
Sleepiness: causes, consequences and treatment. Cambridge, UK: Cambridge University Press 2011:36-49.
3 Miglis, Mitchell G., and Clete A. Kushida. Daytime sleepiness. Sleep medicine clinics, vol. 9, no. 4, 2014. pp.
4 Dodel R, Peter H, Walbert T, et al. The socioeconomic impact of narcolepsy. Sleep. 2004;27(6):1123-1128.
5 Maski K, Steinhart E, Williams D, et al. Listening to the patient voice in narcolepsy: diagnostic delay, disease
burden, and treatment efficacy. J Clin Sleep Med. 2017 Mar 15;13(3):419-425.
6 Thorpy, Michael J., and Ana C. Krieger. Delayed diagnosis of narcolepsy: characterization and impact. Sleep
medicine, vol. 15, no. 5. 2014, pp. 502–507., doi:10.1016/j.sleep.2014.01.015.
7 American academy of sleep medicine. Central disorders of hypersomnolence. In: The international classification
of sleep disorders – Third edition. American academy of sleep medicine. 2014.
http://www.aasmnet.org/ebooks/icsd3 [aasmnet.org] [na01.safelinks.protection.outlook.com]. Accessed February 28, 2014.
8 NINDS narcolepsy fact sheet. National institute of neurological disorders and stroke web site.