“Narcolepsy is a daily battle fought over a lifetime.” – Scott

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Advancements in the understanding of narcolepsy are happening. Sign Up Now »

The Real Impact of Narcolepsy

Narcolepsy symptoms can have functional, psychological, and social impacts, and can be associated with medical comorbidities.1,2

Neurocognitive Functioning

Narcolepsy symptoms can impact neurocognitive functioning, such as the ability to concentrate, read, or remember important details.1,3

Excessive daytime sleepiness (EDS) can contribute to poor or inconsistent academic and occupational performance.1,4 People 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.1,5,6

Psychological Impact

People with narcolepsy can feel isolated, rejected, depressed, and anxious.1,3,4,7 Attention deficit/hyperactivity disorder (ADHD) symptoms are also more frequent in people with narcolepsy.8,9 Many people living with narcolepsy suffer from anxiety disorders, including social anxiety disorder, panic disorder, posttraumatic stress disorder, or agoraphobia.2,8,10

Social Impact

People with narcolepsy may unconsciously avoid or suppress emotions that might trigger their cataplexy. Individuals may gravitate away from or consciously avoid certain activities to prevent cataplexy attacks.5,10,11

Some people with narcolepsy are injured by their cataplexy and many limit driving to reduce their risk for accidents.3,6,12,13 They may also be afraid to cook or bathe for fear of falling asleep or injury.5,12

Know Narcolepsy® Survey

Results from the national 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% agreed they never feel like a “normal” person, and only 12% agreed their symptoms are completely or mostly under control.

View or download a PDF of survey highlights to share with your patients or colleagues.

In another survey of 1,699 people in the United States with self-reported narcolepsy conducted from August 26, 2013, to November 15, 2013, the most bothersome symptoms in at least four in ten respondents were4:

  • excessive daytime sleepiness (EDS)
  • difficulty thinking, remembering, concentrating, or paying attention
  • cataplexy
  • general fatigue

Among the most significant limitations of narcolepsy were being unable to4

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What Matters Most to Patients?

Significant Comorbidities Exist in Narcolepsy

People with narcolepsy have a higher prevalence of comorbidities compared with the average adult.2 Psychiatric comorbidities, especially depression, are reported up to 4 times more often in people with narcolepsy,1 and the risk for cardiovascular diseases is higher.2 The presence of these comorbidities may make recognizing narcolepsy difficult.8,14,15

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More likely to have anxiety2

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Risk for cardiovascular diseases2

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More likely to have mood disorders1

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Risk for diabetes2

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More likely to have high cholesterol2

There’s More to Know About Comorbidities
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What's important when talking to your patients about signs and symptoms of narcolepsy?

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Knowing real stories from people living with narcolepsy can help when evaluating your patients.

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  1. 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.
  2. Black J, Reaven NL, Funk SE, et al. Medical comorbidity in narcolepsy: findings from the Burden of Narcolepsy Disease (BOND) study. Sleep Med. 2017;33:13-18.
  3. American Academy of Sleep Medicine. International Classification of Sleep Disorders. 3rd ed.; 2014.
  4. 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.
  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. 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.
  7. Kapella MC, Berger BE, Vern BA, Vispute S, Prasad B, Carley DW. Health-related stigma as a determinant of functioning in young adults with narcolepsy. PLoS One. 2015;10(4):1-12.
  8. Ohayon MM. Narcolepsy is complicated by high medical and psychiatric comorbidities: a comparison with the general population. Sleep Med. 2013;14(6):488-492.
  9. Filardi M, Pizza F, Tonetti L, Antelmi E, Natale V, Plazzi G. Attention impairments and ADHD symptoms in adult narcoleptic patients with and without hypocretin deficiency. PLoS One. 2017;12(8):1-12.
  10. Overeem S, Reading P, Bassetti C. Narcolepsy. Sleep Med Clin. 2012;7:263-281.
  11. Ahmed I, Thorpy M. Clinical features, diagnosis and treatment of narcolepsy. Clin Chest Med. 2010;31(2):371-381.
  12. 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.
  13. Ahmed IM, Thorpy MJ. Clinical evaluation of the patient with excessive sleepiness. In: Thorpy MJ, Billiard M, eds. Sleepiness: causes, consequences and treatment. Cambridge University Press; 2011: 36-47.
  14. Thorpy MJ, Dauvilliers Y. Clinical and practical considerations in the pharmacologic management of narcolepsy. Sleep Med. 2015;16(1):9-18.
  15. Barateau L, Lopez R, Dauvilliers Y. Management of Narcolepsy. Curr Treat Options Neurol. 2016;18(10):1-13.
  16. Kok SW, Overeem S, Visscher TLS, et al. Hypocretin deficiency in narcoleptic humans is associated with abdominal obesity. Obes Res. 2003;11(9):1147-1154.

Performance of routine tasks without awareness.

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

Complete collapse to the ground; 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 inappropriate transitions between states of sleep and wakefulness.

The inability to stay awake and alert during the day.

A neurotransmitter that supports wakefulness. The TMN is the only source of histamine in the brain.

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

A neuropeptide that supports wakefulness and helps control 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.

Brief, unintentional lapses into sleep or loss of awareness.

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

A state of sleep when muscle tone is decreased. Deep stages help to restore the body.

Overnight study used to diagnose sleep disorders by monitoring sleep stages and cycles to detect disruptions of a normal sleep pattern.

Normally occurs at night and includes vivid dreams. Also known as “paradoxical sleep.”

Daytime and evening habits and routines to help improve nighttime sleep.

Brief loss of control of voluntary muscles with retained awareness.

Sleep-onset REM period.

People with type 1 narcolepsy have low levels of hypocretin.

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