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Narcolepsy Presents Daily Challenges1,2
Symptoms of narcolepsy can significantly interfere with daily activities.1,2
Excessive daytime sleepiness (EDS) can contribute to poor or inconsistent academic and occupational performance.2,3 People living with narcolepsy have high rates of absenteeism due to irresistible sleepiness and are more likely to be unemployed, dismissed from their jobs, or receive disability compensation.3-5
Cataplexy may pose a risk for injury, and many people living with narcolepsy limit driving to reduce their risk for accidents.4,6,7 They may also be afraid to cook or bathe for fear of falling asleep or injury.5,6
Scott, living with narcolepsy
Everyday things that I used to take for granted became a struggle.
Narcolepsy can change the way some people live their lives.2
In a 2013 survey of 1,699 people in the United States with self-reported narcolepsy, at least 40% of participants reported the following symptoms as having the most significant impact on their lives2:
- Excessive daytime sleepiness
- Difficulty thinking, remembering, concentrating, or paying attention
- Cataplexy
- General fatigue/never feeling rested
Most Common Activity Limitations Reported by People Living With Narcolepsy2
Most Common Activity Limitations Reported by People Living With Narcolepsy2
The Know Narcolepsy® Survey
Results from the national 2018 Know Narcolepsy Survey of 1,654 US adults, including people living with narcolepsy (n=200), the general public (n=1,203), and physicians who have treated patients with narcolepsy in the last 2 years (n=251), underscore that narcolepsy can be a substantial and continuing burden. Narcolepsy can have an impact on a person’s daily functioning and social well-being. Of the people living with narcolepsy surveyed, 68% (n=135) agreed they never feel like a “normal” person, and only 12% (n=24) agreed their symptoms are completely or mostly under control.7
The Know Narcolepsy® Survey
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- American Academy of Sleep Medicine. International Classification of Sleep Disorders. 3rd ed. Text Revision. American Academy of Sleep Medicine; 2023.
- 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;13(3):419-425.
- 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.
- Broughton R, Ghanem Q, Hishikawa Y, Sugita Y, Nevsimalova S, Roth B. Life effects of narcolepsy in 180 patients from North America, Asia and Europe compared to matched controls. Can J Neurol Sci. 1981;8(4):299-304.
- Daniels E, King MA, Smith IE, Shneerson JM. Health-related quality of life in narcolepsy. J Sleep Res. 2001;10(1):75-81.
- Overeem S, van Nues S, van der Zande WL, Donjacour CE, van Mierlo P, Lammers GJ. The clinical features of cataplexy: a questionnaire study in narcolepsy patients with and without hypocretin-1 deficiency. Sleep Med. 2011;12(1):12-18.
- Data on file. Harmony Biosciences.
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