7 Myths About Narcolepsy, Debunked
Sleep professionals and the general public have misperceptions about the neurological sleep disorder. How many did you believe?
By Sree Roy
Myth 1: The public gets their information about narcolepsy from reputable sources.
Recent data suggests: The public’s understanding of narcolepsy may be influenced by pop-culture portrayals that aren’t necessarily accurate.
An online survey of 1,000 Americans, conducted by Toluna Analytics and sponsored by Jazz Pharmaceuticals, found that of the 83% of respondents who said they are aware of narcolepsy, 24% reported learning about the sleep disorder from movies (24%) or television shows (35%). What’s more, 43% of respondents who are “aware of narcolepsy” believe “people with narcolepsy fall down often because they lose consciousness while walking or standing”—an exaggerated and inaccurate understanding of the narcolepsy type 1 symptom of cataplexy. (People with narcolepsy do not lose consciousness during cataplexy episodes.)
Seventeen percent of survey respondents reported they’ve never heard of narcolepsy.1
Myth 2: People know that excessive daytime sleepiness (EDS) is a cardinal symptom of narcolepsy.
Recent data suggests: In the same online survey, 32% of people said they are familiar with the symptoms of narcolepsy, but only 10% knew that all people with narcolepsy have excessive daytime sleepiness. What’s more, only half (51%) who reported they have heard of narcolepsy or are familiar with the symptoms said they considered excessive daytime sleepiness to be a potential indicator of narcolepsy.1
“These survey results reiterate that public understanding of narcolepsy is limited and often inaccurate and there is a need for the entire narcolepsy community, including patient advocacy organizations, researchers, clinicians, drug developers, and local communities to continue working to help combat misperceptions about narcolepsy that are common among the general population in the US,” said Julie Flygare, JD, president and CEO of Project Sleep, in a release.
Myth 3: A person will seek medical attention if sleepiness has a noticeable negative impact on his/her life.
Recent data suggests: After being told that excessive daytime sleepiness is defined as the inability to stay awake and alert during the day resulting in drowsiness and unplanned lapses in sleep, 65% of respondents in the same online survey said this is something they “commonly” experience and 15% reported this is something they “sometimes” experience.
One-third reported driving a vehicle while drowsy, 11% reported being in a car accident as a result of being tired, 38% reported an inability to concentrate at work, more than 30% reported needing to take a personal day because they were too tired, and about 20% reported making a mistake that resulted in personal injury or injury to someone else. But only 31% of the respondents had sought medical help for sleep or sleepiness issues.1
Jed Black, MD, senior vice president, Sleep and Neuroscience at Jazz Pharmaceuticals and adjunct professor at Stanford University Medical Center, Stanford Center for Sleep Sciences and Medicine, said in a release, “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. Many people experiencing symptoms of narcolepsy, like EDS, don’t realize that it could be the result of a serious, but treatable, neurological condition.”
Myth 4: The symptom most specific to a diagnosis of narcolepsy—cataplexy—is obvious when it is present.
Recent data suggests: Patients and even many physicians do not recognize the muscle weakness when they see or experience it.
A recent guide to improved recognition, diagnosis, and management observed, “In adults who experience cataplexy, recognition of these symptoms may be poor. In fact, many may refer to themselves as clumsy or have unwittingly developed avoidance techniques to mute emotional experience.”2
A recent survey, financially supported by Harmony Biosciences LLC, of 200 patients with narcolepsy and 251 physicians found that 25.5% of patients reported cataplexy as a symptom, but an additional 32.5% reported brief/mild muscular weakness triggered by emotions (the latter also falling within the medical definition of cataplexy). Physicians “may be more aware of [cataplexy] when it’s obvious, but less aware of its more subtle manifestations—and consequently patients are not aware of subtle weakness as being cataplexy,” said lead investigator Michael J. Thorpy, MB, ChB, in a phone interview about the study.3
In the management guide, pediatric neurologist and sleep specialist Anne Marie Morse, DO, said, “It is critical to re-evaluate for symptoms of cataplexy at every visit for individuals who have excessive daytime sleepiness, even those who may have been diagnosed with another sleep disorder, such as sleep apnea, to ensure that the diagnosis of narcolepsy is not missed.”2
And in a public sample, among people who reported they have heard of narcolepsy or are familiar with the symptoms, 73% had not heard of cataplexy.1
Myth 5: Sleep specialists always know whether their patients’ narcolepsy symptoms are under control.
Recent data suggests: Almost half of the physicians in the Harmony Biosciences-supported burden of narcolepsy survey were board-certified sleep specialists. Even so, twice the percent of physicians (27.5%) reported that they felt that patients’ symptoms were well-controlled than what patients themselves reported (12%).
Thorpy said, “We need to have a better understanding about how it’s affecting them in their home life, and relationships with family members and others, and in their work environment, as well as the characteristic features of their symptoms and how we can help them deal with their symptoms.”
Myth 6: Physicians have the same diagnostic challenges with children who have narcolepsy as they do with adults.
Recent data suggests: Both children and adults with narcolepsy may be misdiagnosed.
In the case of children, their narcolepsy symptoms “may be overlooked, misdiagnosed or considered typical for childhood,” reports a management guide published in Medical Sciences. “For instance, sleep-related hallucinations or REM behavior disorder may be perceived as nightmare disorder or other non-REM parasomnia. Sleep fragmentation, nocturnal awakenings, and poor sleep efficiency may be considered behavioral, hormonal or related to sleep disordered breathing, especially when there is significant weight gain accompanying the onset of symptoms.”2
Myth 7: Families of people with narcolepsy turn to their medical team with their worries.
Recent data suggests: A research investigation in Canada gave 30 caregivers of adolescents with narcolepsy the Pediatric Quality of Life Inventory Family Impact Module questionnaire. Scores in the worry domain—which asks about worries related to medical treatments efficacy, treatment side effects, others reaction to their child’s illness, illness affecting other family members, and the child’s overall future—were the lowest (worst).4
But the investigators note that research suggests that when families of pediatric narcolepsy patients are asked who they relied on for support with their child’s sleep disorder, 77% replied that they relied on their spouses—while only 27% reported relying on their child’s clinical team.4,5
The investigators recommend that clinicians assess family functioning at routine clinic visits. “One possible way that clinical teams can help families with narcolepsy feel supported is by hosting narcolepsy family education days or peer-support groups at their institution to provide patients and their families with an opportunity to connect and network with other families whom they can relate to….Clinical teams may want to provide school-aged narcolepsy patients with a letter explaining the diagnoses and lead educational seminars on the condition for school personnel.”4
Sree Roy is editor of Sleep Review.
- Jazz Pharmaceuticals Narcolepsy Survey. Conducted by Toluna Analytics for Jazz Pharmaceuticals, August 2019.
- Morse AM. Narcolepsy in children and adults: a guide to improved recognition, diagnosis and management. Med Sci (Basel). 2019 Nov 27;7(12).
- Thorpy MJ, Hopper J, Patroneva A. 0592 Burden of narcolepsy: a survey of patients and physicians. Sleep. 12 April 2019;42(suppl_1):A236.
- Parmar A, Yeh EA, Korczak DJ, et al. Family functioning among adolescents with narcolepsy. Paediatr Child Health. 2019 Dec;24(8):490-4.
- Kippola-Pääkkönen A, Härkäpää K, Valkonen J, et al. Psychosocial intervention for children with narcolepsy: Parents’ expectations and perceived support. J Child Health Care. 2016 Dec;20(4):521-9.
from Sleep Review https://www.sleepreviewmag.com/sleep-disorders/hypersomnias/narcolepsy/myths-narcolepsy-debunked/