“It's hard to tell where narcolepsy ends and where I begin.”– Nicki

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Advancements in the understanding of narcolepsy are happening. Sign up now »

The Impact of Narcolepsy

Narcolepsy can have functional, psychological, and social impact on patients 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 reported more frequently and at a greater severity in people with narcolepsy compared to the general population.9 Many people living with narcolepsy suffer from anxiety disorders, including social anxiety disorder, panic disorder, posttraumatic stress disorder, or agoraphobia.2,9,10

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

THE KNOW NARCOLEPSY SURVEY

Results from the national 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.14

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THE KNOW NARCOLEPSY SURVEY

Science of Narcolepsy

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

Comorbidities in people living with narcolepsy

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More likely to have anxiety2

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More likely to develop cardiovascular disease2

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Are overweight15

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More likely to have mood disorders1

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More likely to develop diabetes2

H30 Impact Comorbid Icon6 1 5X

More likely to have high cholesterol2

THERE'S MORE TO KNOW
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Narcolepsy symptoms reflect the underlying sleep-wake state instability.

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Stories from people living with narcolepsy can help you understand the impact of the disorder.

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The Narcolepsy Assessment Tool may help your patients assess how narcolepsy may be interfering with their lives.

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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. Darien, IL: American Academy of Sleep Medicine; 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, UK: Cambridge University Press; 2011:36-47.
  14. Data on file. Harmony Biosciences. 2018.
  15. 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 tone, often triggered by strong emotions or certain situations. Narcolepsy with cataplexy is known as narcolepsy type 1.

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 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 frightening dream-like events that occur when falling asleep.

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 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 low-amplitude, fast-frequency 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.