Marking World Narcolepsy Day: New Survey Highlights How Narcolepsy’s Impact Goes Beyond Sleep

New research findings from Mood Disorders Society of Canada show narcolepsy is far more than excessive daytime sleepiness, revealing diagnostic delays and the significant toll the disease can take on daily life.

TORONTO, Sept. 22, 2026 /CNW/ — In recognition of World Narcolepsy Day, Mood Disorders Society of Canada (MDSC), in collaboration with Wake Up Narcolepsy, conducted a survey* of Canadians living with narcolepsy and their caregivers to better understand their experiences and help raise awareness of the disease.

The findings shed light on the significant burden narcolepsy places on those affected. More than two thirds of respondents (68%) rated the disease’s impact on their quality of life between eight and 10 on a 10-point scale (with 10 indicating the most severe impact), providing insight into the day-to-day realities of living with the disease.

Narcolepsy is a chronic, rare neurological disease that affects the brain’s ability to regulate sleep-wake cycles. Common symptoms include excessive daytime sleepiness, sleep paralysis, hallucinations and more. The disease is classified as either Type 1 narcolepsy, accompanied by cataplexy, a brief loss of muscle tone caused by strong emotions, or Type 2 narcolepsy, which occurs without cataplexy.^1,2 In addition to these symptoms, narcolepsy is linked to psychiatric comorbidities, including anxiety disorders, which can further affect quality of life.^1,3

“Despite its impact, survey findings identify gaps across the narcolepsy journey, from misdiagnosis to ongoing challenges managing symptoms,” said Aimée Tran Ba Huy, National Project Coordinator with MDSC. “As a disease that is often associated with mental illness comorbidities, narcolepsy can have far-reaching effects on quality of life, relationships, work and overall well-being.”

The Impact of Narcolepsy Extends Beyond Sleep

The survey reveals that narcolepsy’s impact can affect many aspects of life:

• Many respondents reported significant disruptions to their ability to participate in everyday life, with more than half (57%) having to stop work, school or volunteering at some point because of their disease, and 81% reporting reduced productivity or difficulty managing daily responsibilities.
• Nearly eight in 10 (79%) said narcolepsy had affected their relationships and social activities, while two-thirds (66%) experienced emotional distress.
• The impact extended beyond those living with the disease, with half of caregiver respondents reporting a significant impact on their own well-being (rated 8-10 out of 10 with 10 representing the greatest impact).

Canadians like Rosa Overwater know firsthand the impact of living with narcolepsy and are raising awareness. “Before I was diagnosed, I slept through a lot of school. My grades dropped, I was constantly exhausted, and eventually I lost my driver’s licence until I was able to receive treatment,” said Rosa Overwater. “Living with narcolepsy means it’s always in the back of your mind. Even when I’m medicated and feel the most awake, it never truly goes away. It affects everything from school and work to social activities, and many people don’t realize how much it can impact day-to-day life.”

Misdiagnosis and Delays Impact Outcomes

The path to a diagnosis can be long and complex. Respondents experienced an average of seven symptoms simultaneously, spanning cognitive, emotional, physical and sleep-related domains. For many respondents, identifying the cause of these symptoms proved challenging, with more than half (56%) receiving another diagnosis before being diagnosed with narcolepsy. The most commonly reported diagnoses were depression (64%), chronic fatigue or burnout (40%) and anxiety (32%).

Limited awareness of narcolepsy can make symptoms difficult to recognize. With more than 60% of respondents waiting six years or longer to receive a narcolepsy diagnosis, including 31% who waited more than a decade, these findings emphasize the need for improved understanding of narcolepsy and its symptoms.

Addressing Gaps Across the Narcolepsy Journey

Addressing gaps requires a better understanding of what matters most to people living with narcolepsy.

“As we recognize World Narcolepsy Day, we encourage Canadians to learn more about the symptoms and talk to their healthcare professional about diagnosis, care and treatment,” said Tran Ba Huy. “With 72% of respondents reporting that available treatments are not adequately meeting their needs, there is a clear need to improve recognition, support and access to effective treatment options for people living with narcolepsy.”

MDSC continues to work towards addressing these realities and gaps through their patient-centred Value Consideration Framework. This work encourages a broader understanding of mental illness and neurological disorders, such as narcolepsy, by considering interconnected domains such as symptom severity, day-to-day activity, quality of life, side effects and survival, and two overarching dimensions (caregiver, family and friend impact; societal impact). It provides a holistic, person-centred lens to broaden consideration of meaningful treatment value.  

For a copy of the full narcolepsy survey report, please visit mdsc.ca. Additional information about narcolepsy can be found at wakeupnarcolepsy.org.

*Source:

An online survey was conducted by Narrative Research between June 16 and August 3, 2026, among 47 Canadian adults aged 18 and older, including 43 individuals living with narcolepsy and four caregivers. The survey was distributed in English and French through MDSC’s social media channels and partner networks. Respondents were asked about their experiences with narcolepsy, including symptoms, quality of life, diagnosis, treatment, daily functioning, caregiving and unmet needs. Findings reflect the experiences of respondents and are not statistically representative of all Canadians living with narcolepsy or their caregivers. The survey was supported through an unrestricted grant from Takeda.

About Mood Disorders Society of Canada (MDSC):

MDSC is a national, not-for-profit, voluntary health charity committed to ensuring that the voices of persons impacted by mental illness, family members, and caregivers are heard on issues relating to mental health and mental illness; and in particular with regard to depression, bipolar illness and other associated mood disorders. MDSC has evolved to become one of Canada’s best-connected mental health NGOs with a demonstrated track record for forging and maintaining meaningful and sustained partnerships with the public, private and non-profit sectors throughout Canada.

About Wake Up Narcolepsy: 

Wake Up Narcolepsy (WUN) is a 501(c)(3) nonprofit organization dedicated to driving Narcolepsy awareness, education and research towards improved treatments and a cure. WUN accomplishes its mission by providing funding to accelerate a cure, increasing awareness, decreasing time from symptom onset to proper diagnosis and providing supportive resources for people with Narcolepsy and their families. Since 2008, WUN has donated over $1.77 million to research.

References

SOURCE Mood Disorders Society of Canada