World Sleep Day: Elevating the Voices of the Sleep Community

On World Sleep Day, we recognize the global sleep community and join its many members in advocating for the critical importance of sleep health. Research is clear that sleep is an essential pillar of health, one that should be ranked as highly as nutrition and physical activity. [1], [2] Similarly, sleep health is a holistic and multidimensional concept that goes beyond the idea of getting “enough” sleep to encompass factors including the efficiency, timing, regularity, and quality of a person’s sleep, in addition to the alertness they are able to maintain during waking hours as a result.

When considering sleep from this perspective, we can begin to appreciate the magnitude of living with a sleep disorder and the extent to which, if left untreated, it can shape a person’s lived experience.

Sleep disorders such as narcolepsy, a rare disorder which affects an estimated 170,000 people in the United States, [3] are often misunderstood and can carry stigmas for those who live with them.[4] These disorders cause disruptive impacts that can influence a person’s overall health, academic and professional pursuits, ability to maintain familial and/or social obligations, and can impose an emotional weight from not being able to predict or control their symptoms. [5]

Listening to firsthand experiences and understanding the challenges people face are ways we can raise awareness about narcolepsy and other sleep disorders and help reduce the stigma surrounding them. Recently, we asked people living with sleep disorders to describe – in their own words – one thing they wished others knew about their experience:

“One thing I wish people knew about living with narcolepsy is that it doesn’t make someone lazy or unreliable. We can be productive, ambitious, and hard-working individuals. While narcolepsy can require some lifestyle adjustments, medications, or accommodations, it does not mean we cannot achieve goals and be successful!”

– Ashley Blankenship

“One thing I wish people knew about living with idiopathic hypersomnia (IH) is it’s especially difficult for someone that’s a high achiever. There are so many things I want to accomplish in life, but my IH limits my ability to do them. It’s like being trapped in a body that doesn’t allow me to live to my full potential.”

– Caitlin Kindberg

“The one thing I want people to know about living with narcolepsy is that it’s so different for each person. The best way to learn about narcolepsy is to listen to the stories of the people living with it, rather than assuming you know how it affects them. It’s such a complex disorder and can affect all areas of life in so many ways.”

– Cara Weaver

“Although idiopathic hypersomnia is invisible, it impacts every aspect of my life. IH is a factor in every decision that I make, and diagnosis led me to build a much slower paced and flexible life than I ever thought I would.”

– Amy Desmarais

Alkermes believes in working closely with patients, caregivers and advocates to better understand their experiences, their goals, and how potential solutions may impact their lives.

Our R&D program is an extension of this commitment to patient-centric drug development and patient-inspired innovation. For example, our orexin research program in narcolepsy and idiopathic hypersomnia, which is exploring potential new treatment options for these conditions, is incorporating the patient voice across the development process.

As we continue our research, Alkermes is committed to raising awareness about the burden of sleep disorders and amplifying the voices of people who are affected by them so that, together, we can clarify misconceptions, reduce stigma, and work toward patient-centric scientific breakthroughs for the sleep community.

References

[1] Cassidy S, Chau JY, Catt M, et al. Cross-sectional study of diet, physical activity, television viewing and sleep duration in 233,110 adults from the UK Biobank; the behavioral phenotype of cardiovascular disease and type 2 diabetes. BMJ Open 2016; 6: e010038

[2] Hale L, Troxel W, Buysse DJ. Sleep Health: An Opportunity for Public Health to Address Health Equity. Annu Rev Public Health. 2020;41:81-99. doi:10.1146/annurev-publhealth-040119-094412

[3] Cohen, A., Mandrekar, J., St Louis, E. K., Silber, M. H., & Kotagal, S. (2018). Comorbidities in a community sample of narcolepsy. Sleep medicine, 43, 14–18. https://doi.org/10.1016/j.sleep.2017.11.1125

[4] Schokman A., et al. O066 The Lived Experience of Narcolepsy - From Symptoms to Stigma. Sleep Adv. 2023 Oct; 4(Suppl 1): A26. doi: 10.1093/sleepadvances/zpad035.066

[5] NIH National Institute of Neurological Disorders and Stroke. Narcolepsy. Accessed February 22, 2024. Available at: https://www.ninds.nih.gov/health-information/disorders/narcolepsy .