Changing the Perception of Narcolepsy to Reduce Stigma: Mark I. Boulos, MD, MSc, FRCP, CSCN


The associate professor, department of medicine, division of neurology, Institute of Medical Science, University of Toronto, discussed recent research that challenged the conventional definitions of sleep and how narcolepsy is often stigmatized. [WATCH TIME: 2 minutes]

WATCH TIME: 2 minutes

"The truth is, narcolepsy is a brain disorder, often misunderstood as laziness or poor time management, thus highlighting the need to break the stigma and promote early detection."

Narcolepsy, a rare sleep disorder, has a substantial adverse impact on patients’ health-related quality of life and psychological well-being. A recent study published in SLEEP Advances showed that patients with narcolepsy identified fatigue, sleepiness, and 2 separate experiences of 'falling asleep/sleep attacks' as distinct symptoms often grouped as excessive daytime sleepiness.1 Additionally, patients in the study attributed their own meaning of the condition that differed from the literature. Notably, almost all participants experienced frequently anticipated and internalized- or self-stigma, which researchers suggested was likely because of societal devaluation of sleep and conflation of sleepiness with laziness.

In a recent meta-analysis published in Sleep Medicine, findings showed a longer average of mean sleep latency among healthy adults who used a more updated definition of sleep onset.2 Among 110 cohorts involving 4058 healthy adults, the average mean sleep latency was 11.7 min (95% CI, 10.8–12.6; 95% PI, 5.2–18.2) for studies that used the earlier definition of sleep onset and 11.8 min (95% CI, 10.7–12.8; 95% PI, 7.2–16.3) for those evaluated using the later definition. Therefore, investigators concluded that establishing updated ranges for mean sleep latency may guide decision-making surrounding sleep pathologies and better inform research in the future.

Senior author Mark I. Boulos, MD, BSc, FRCP, CSCN, MSc, associate professor, department of medicine, division of neurology, Institute of Medical Science, University of Toronto, recently sat down in an interview with NeurologyLive® to discuss how the international standard for defining the onset of sleep can contribute to more accurate sleep disorder diagnoses, particularly in narcolepsy. Boulos shared the next steps that can be taken to improve education among both patients and healthcare professionals for early detection of narcolepsy. In addition, he spoke about how the prevailing stigma associated with narcolepsy impacts the quality of life for individuals with this sleep disorder.

1. Schokman A, Cheung J, Milton A, et al. The Lived Experience of Narcolepsy - From Symptoms to Stigma,SLEEP Adv. 2023;4(Supplement_1):A26. doi:/10.1093/sleepadvances/zpad035.066
2. Iskander A, Jairam T, Wang C, Murray BJ, Boulos MI. Normal multiple sleep latency test values in adults: A systematic review and meta-analysis. Sleep Med. 2023;109:143-148. doi:10.1016/j.sleep.2023.06.019
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