19 September 2024

Wake up to World Narcolepsy Day!

Illustration of person asleep at desk for World Narcolepsy Day

What is World Narcolepsy Day?

World Narcolepsy Day is recognised on 22 September every year [1]. Established in 2019 by 24 patient advocacy organisations, World Narcolepsy Day aims to raise awareness of narcolepsy to help reduce diagnostic delays, decrease stigma and improve outcomes [1].

What is narcolepsy?

Narcolepsy is a rare, chronic neurological condition that impairs the ability to regulate sleeping and waking patterns [2]. Narcolepsy affects approximately 3 million people worldwide and encompasses two distinct types: narcolepsy type 1 (NT1) and narcolepsy type 2 (NT2) [1]. NT1 is caused by low levels of orexin, which is a chemical messenger in the brain that regulates various vital functions, including sleeping and waking [1, 3–6]. The cause of NT2 is unknown, but it may result from partial orexin deficiency [7, 8].

What are the symptoms of narcolepsy?

There are five main symptoms of narcolepsy, often described as the pentad of symptoms [1, 3, 9, 10]:

diagram showing five symptoms of narcolepsy

In addition to the pentad of symptoms, people with narcolepsy may experience difficulties with cognition (thinking and reasoning) in addition to a variety of physical and psychiatric symptoms/conditions:

  • Cognitive difficulties, including general fatigue, brain fog, and difficulty thinking, remembering, concentrating or paying attention [11]
  • Physical conditions, including sleep apnoea, weight gain and diabetes [11, 12]
  • Psychiatric conditions, including depression, attention deficit hyperactivity disorder (ADHD) and anxiety [13–16]

What is the impact of narcolepsy on daily life?

Narcolepsy symptoms, particularly cognitive difficulties, can have a significant impact on the daily lives of people with narcolepsy [11]. People with narcolepsy may struggle with daily activities, such as [11, 13]:

Image showing a sad person with narcolepsy worrying about daily activities

Finding it difficult to partake in routine tasks can feel restricting and may contribute to a poor quality of life for people with narcolepsy [11]. In addition to the daily challenges associated with narcolepsy symptoms, people with narcolepsy may experience stigma, which can have both social and psychological effects. Excessive daytime sleepiness and difficulties concentrating can contribute to people with narcolepsy being incorrectly perceived as lazy, unintelligent or lacking in ambition [17]. The internalisation of these perceptions can lead to social withdrawal and adds to the burden of coping with narcolepsy [17].

Why is it important to reduce diagnostic delays in narcolepsy?

It can take between 8 and 15 years after symptom onset to receive a narcolepsy diagnosis, and affected individuals are commonly misdiagnosed with epilepsy, depression or schizophrenia [1]. Reducing the time to diagnosis of narcolepsy may enable individuals to receive support from family, friends, colleagues and healthcare professionals (HCPs) to help manage the burden of narcolepsy. In addition, reducing the time to diagnosis may enable earlier treatment initiation and it may also aid affected individuals in gaining social support and understanding in both their personal and their professional lives.

 Why is it important to raise awareness of narcolepsy?

Increased awareness and education of narcolepsy among the public and HCPs is important to improve symptom recognition, reduce incorrect and delayed diagnosis, and improve outcomes by enabling earlier treatment initiation. Expanding societal understanding may help reduce the burden of narcolepsy on daily life and the stigma surrounding narcolepsy [1, 11].

Conclusion

From diagnostic delays to difficulties in carrying out daily activities, the journey of narcolepsy can be a difficult one. World Narcolepsy Day is dedicated to raising awareness, shortening diagnostic delays and reducing the stigma of narcolepsy on a global scale.

Please visit the World Narcolepsy Day website (https://project-sleep.com/worldnarcolepsyday/) to see how you can get involved and help by raising awareness of narcolepsy and using the hashtag #WorldNarcolepsyDay [1].

The information in this article is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content is for general information purposes only. Always seek the guidance of your doctor or other qualified healthcare professional with any questions you may have regarding your health or medical condition.

References

  1. Project Sleep. World Narcolepsy Day. Available at: https://project-sleep.com/worldnarcolepsyday/ Accessed September 2024.
  2. Longstreth WT, Jr, Koepsell TD, Ton TG et al. The epidemiology of narcolepsy. Sleep 2007; 30 (1): 13–26.
  3. American Psychiatric Association. Sleep–wake disorders; narcolepsy. In: Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision. American Psychiatric Association; 2022.
  4. Nishino S, Ripley B, Overeem S et al. Hypocretin (orexin) deficiency in human narcolepsy. Lancet 2000; 355 (9197): 39–40.
  5. Peyron C, Faraco J, Rogers W et al. A mutation in a case of early onset narcolepsy and a generalized absence of hypocretin peptides in human narcoleptic brains. Nat Med 2000; 6 (9): 991–997.
  6. Crocker A, España RA, Papadopoulou M et al. Concomitant loss of dynorphin, NARP, and orexin in narcolepsy. Neurology 2005; 65 (8): 1184–1188.
  7. Thannickal TC, Moore RY, Nienhuis R et al. Reduced number of hypocretin neurons in human narcolepsy. Neuron 2000; 27 (3): 469–474.
  8. Barateau L and Dauvilliers Y. Recent advances in treatment for narcolepsy. Ther Adv Neurol Disord 2019; 12: 1756286419875622.
  9. Ruoff C and Rye D. The ICSD-3 and DSM-5 guidelines for diagnosing narcolepsy: Clinical relevance and practicality. Curr Med Res Opin 2016; 32 (10): 1611–1622.
  10. International Classification of Sleep Disorders – Third Edition, Text Revision. American Academy of Sleep Medicine; 2023.
  11. Maski K, Steinhart E, Williams D et al. Listening to the patient voice in narcolepsy: Diagnostic delay, disease burden, and treatment efficacy. J Clin Sleep Med 2017; 13 (3): 419–425.
  12. Black J, Reaven NL, Funk SE et al. Medical comorbidity in narcolepsy: Findings from the Burden of Narcolepsy Disease (BOND) study. Sleep Med 2017; 33: 13–18.
  13. Canellas F, Lin L, Julià MR et al. Dual cases of type 1 narcolepsy with schizophrenia and other psychotic disorders. J Clin Sleep Med 2014; 10 (9): 1011–1018.
  14. Fortuyn HAD, Lappenschaar MA, Furer JW et al. Anxiety and mood disorders in narcolepsy: A case-control study. Gen Hosp Psychiatry 2010; 32 (1): 49–56.
  15. Lecendreux M, Lavault S, Lopez R et al. Attention-deficit/hyperactivity disorder (ADHD) symptoms in pediatric narcolepsy: A cross-sectional study. Sleep 2015; 38 (8): 1285–1295.
  16. Lee M-J, Lee S-Y, Yuan S-S et al. Comorbidity of narcolepsy and depressive disorders: A nationwide population-based study in Taiwan. Sleep Med 2017; 39: 95–
  17. Sleep-Disorders.net. Confronting narcolepsy stigma. Available at: https://narcolepsy.sleep-disorders.net/stigma. Accessed September 2024.

Photo of female author and medical writer at Porterhouse Medical Author:  Louise Smith / Medical Writer / Porterhouse Medical