Jazz Pharmaceuticals Survey Highlights Prevalence of Misinformation and Misperception About Narcolepsy Among Americans
The online survey, conducted by Toluna Analytics and sponsored by
Some of the respondents who reported they have heard of narcolepsy or are familiar with its symptoms said they heard about the condition from movies (24%) or television shows (35%).3 Additionally, 43% of survey respondents who are aware of narcolepsy believe people with narcolepsy fall down often because they lose consciousness while walking or standing.3 These findings from the survey suggest that exaggerated portrayals of narcolepsy in movies and television may contribute to misperceptions of the condition and its characteristic symptoms.
"On the heels of the inaugural World Narcolepsy Day, which took place on Sunday, September 22, 2019, we're pleased to see these continued efforts to raise critical awareness for narcolepsy," said
Of the people who reported they are familiar with the symptoms of narcolepsy, only 10% believe all people living with the condition have excessive daytime sleepiness (
Survey respondents were also asked about their level of sleepiness during the day. After being informed of the definition of
Being too tired may have an impact on day-to-day life for any population, both personally and professionally, which survey results also revealed. One-third of respondents reported driving a vehicle while drowsy and 11% reported being in a car accident as a result of being tired.3 At work, survey respondents reported inability to concentrate (38%), as well as lack of productivity (36%) and motivation (45%) due to being too tired.3 More than 30% reported needing to take a personal day because they were too tired to go to work, and approximately 20% reported making a mistake that resulted in personal injury or injury to someone else.3 Despite these serious issues, only 31% of the respondents had sought medical help for sleep or sleepiness issues.3
"At Jazz, we are committed to raising awareness of sleep disorders, like narcolepsy, and it's clear there is still work to be done to clarify misconceptions related to the condition and help people understand and identify its key symptoms," said
Jazz is committed to bringing more awareness to narcolepsy and other serious sleep disorders and helping people with these conditions at every stage of their journey – from education and diagnosis to treatment and patient assistance.
About the Survey
Narcolepsy is a chronic, debilitating neurological disorder characterized by
Cataplexy, the most specific symptom of narcolepsy, is the sudden, generally brief (<2 minutes) loss of muscle tone with retained consciousness. It is usually triggered by strong emotions, such as laughter, surprise, or anger.7,9,11 Although many emotions can potentially lead to cataplexy, those associated with mirth are usually the most potent.7 Cataplexy occurs in about 70% of people with narcolepsy.11 Presentation differs widely among people with narcolepsy, ranging from sporadic partial attacks triggered by laughter to frequent complete collapse brought about by a variety of emotions.7,9 Complete collapse is less common.9 More commonly, episodes of cataplexy involve only certain muscle groups, such as arms and legs (e.g., knees buckling), the head and neck (e.g., head dropping), or the face and jaw (e.g., sagging, slurred speech, eyelid drooping).7,9,11,12
About Jazz Pharmaceuticals plc
- Morrish E, King M, et al. Factors associated with a delay in the diagnosis of narcolepsy. Sleep Medicine. 2004;5(1):37-41.
- Ahmed I, Thorpy, M. Clinical Features, Diagnosis and Treatment of Narcolepsy. Clin Chest Med. 2010;31(2):371-381.
Jazz Pharmaceuticals Narcolepsy Survey. Conducted by Toluna Analytics for Jazz Pharmaceuticals, August 2019.
- Kim L, Coelho FM, et al. Frequencies and Associations of Narcolepsy-Related Symptoms: A Cross-Sectional Study. J Clin Sleep Med. 2015 Dec 15; 11(12): 1377–1384.
F.C.B. Lima, et al. Thinking outside the box: cataplexy without narcolepsy. Sleep Medicine. Volume 61, September 2019, Pages 118-121.
- Thorpy M, Krieger A. Delayed diagnosis of narcolepsy: characterization and impact. Sleep Medicine. 2014;15(5):502–507.
American Academy of Sleep Medicine. Central disorders of hypersomnolence. In: The International Classification of Sleep Disorders – Third Edition (ICSD-3). Darien, IL: American Academy of Sleep Medicine; 2014. American Academy of Sleep Medicine. The International Classification of Sleep Disorders. Third Edition (ICSD-3). 2014.
- 9. Ahmed I, Thorpy, M. Sleepiness: Causes, Consequences and Treatment, ed. Cambridge University Press. 2011:36-49.
- Pelayo R, Lopes MC. Narcolepsy. In: Lee-Chiong TL, ed. Sleep: A Comprehensive Handbook. Hoboken, NJ: Wiley and Sons, Inc.; 2006:145-149.
- Overeem S, van Nues SJ, van der Zande WL, et al. The clinical features of cataplexy: a questionnaire study in narcolepsy patients with and without hypocretin-1 deficiency.Sleep Med. 2011;12(1):12-18.
- Overeem S. The clinical features of cataplexy. In: Baumann CR, Bassetti CL, Scammell TE, eds. Narcolepsy: Pathophysiology, Diagnosis, and Treatment. New York, NY: Springer Science+Business Media; 2011:283-290.
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