Advancements in the understanding of narcolepsy are happening. Register for updates »

Advancements in the understanding of narcolepsy are happening. Register for updates »

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.1,4,6,7 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.1,2

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

    Activity Limitations

    Most Common Activity Limitations Reported by People Living With Narcolepsy2

    Common limitations type 1a mobile
    Common limitations type 2a mobile

    The Know Narcolepsy® Survey

    Results from the national 2018 Know Narcolepsy Survey of 1654 US adults, including people living with narcolepsy (n=200), the general public (n=1203), 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

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    The Know Narcolepsy® Survey

    Science of Narcolepsy
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    1. American Academy of Sleep Medicine. International Classification of Sleep Disorders. 3rd ed. Darien, IL: American Academy of Sleep Medicine; 2014.
    2. 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.
    3. 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.
    4. 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.
    5. Daniels E, King MA, Smith IE, Shneerson JM. Health-related quality of life in narcolepsy. J Sleep Res. 2001;10(1):75-81.
    6. 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.
    7. Data on file. Harmony Biosciences.

    Performance of routine tasks without awareness.

    Sudden and brief loss of muscle tone, often triggered by strong emotions or certain situations. Narcolepsy with cataplexy is known as narcolepsy type 1.

    Complete collapse to the ground; nearly all skeletal muscles are involved.

    Only certain muscle groups are involved.

    Biological clock mechanism that regulates the 24-hour cycle in the physiological processes of living beings. It is controlled in part by the SCN in the hypothalamus and is affected by the daily light-dark cycle.

    Frequent awakenings and inappropriate transitions between states of sleep and wakefulness during nighttime sleep.

    The inability to stay awake and alert during the day.

    A neurotransmitter in the brain that supports wakefulness.

    Vivid, realistic, and sometimes frightening dream-like events that occur when falling asleep.

    Also known as orexin. A neuropeptide that supports wakefulness and helps suppress non-REM sleep and REM sleep.

    Primary brain region for regulating the timing of sleep-wake states.

    Unintentionally falling asleep due to excessive daytime sleepiness. Also known as “sleep attacks.”

    Brief, unintentional lapses into sleep or loss of awareness.

    A validated objective measure of the tendency to fall asleep in quiet situations.

    People living with narcolepsy type 1 have low levels of hypocretin.

    Narcolepsy without cataplexy; the cause of narcolepsy type 2 is unknown.

    A state of sleep characterized by slower-frequency, more synchronized neuronal activity and decreased muscle tone. Deep stages help to restore the body.

    A multiparameter test that monitors physiologic signals during sleep; used as a diagnostic tool in sleep medicine.

    A state of sleep characterized by fast-frequency, desynchronized activity on EEG, vivid dreams, and loss of muscle tone. Normally occurs 60-90 minutes after sleep onset. Also known as “paradoxical sleep.”

    Brief loss of control of voluntary muscles with retained awareness at sleep-wake transitions.

    Sleep-onset REM period.

    The VLPO as well as the median preoptic nucleus (MnPO) are located in the hypothalamus and contain essential neurons for promoting non-REM sleep. These neurons project to all wake-promoting regions to inhibit wakefulness and promote non-REM sleep during the night.8,11 Neurons in the extended VLPO mediate the promotion of REM sleep by inhibiting certain wake-promoting neurons that suppress REM sleep.8