Information for teachers and other educators

If you are a teacher, or other educator, with a pupil or other in your care, who has narcolepsy, you will need to understand more about the disability, how it affects the pupil, and what you need to do to make reasonable accomodation to ensure that the pupil makes the most of their education.

What is narcolepsy?

Narcolepsy is a chronic neurological condition characterised by excessive daytime sleepiness and often an array of other symptons, including (but not not limited to) cataplexy, sleep paralysis, hallucinations, sleep fragmentation, vivid dreams, poor memory, automatic behaviour and obesity.

Narcolepsy is a disability that affects 1 in 2,500 people (around 30,000) in the UK. There is currently no cure, although medication and lifestyle changes can make life more manageable.

In most cases of narcolepsy, there is a loss of neurons that produce hypocretin (also called Orexin), a neurotransmitter that plays a central role in the regulation of alertness, motivation and mood. The damage to this important signalling system is though to be the result of an automimmune attack arising from the combination of a genetic predisposition and an insult to the immune system (for example by a pathogen like an influenza virus).

What are the symptons?

All people with narcolepsy experience excessive daytime sleepiness (EDS), characterised by persistent and overwhelming sleepiness during the day. The pressing need to sleep usually builds over minutes, but some people wih narcolepsy can also experience “sleep attacks” where the transition from wake to sleep occurs without warning. 

The majority of people with narcolepsy will also experience cataplexy, a sudden loss of muscle tone triggered by intense, often positive emotions such as laughter or surprise. The severity and duration of a cataplectic attack varies widely between people and from one situation to the next. It may cause the lips to quiver and eyelids to close, the jaw to drop and the head to slump, slurred speech and the complete inability to vocalise, paralysis of skeletal muscles and eventual collapse. Importantly a person experiencing cataplexy will remain completely conscious throughout an attack (in contrast to sleep or epilepsy).

There are other symptons such as sleep paralysis, with people waking up unable to move. This state is not dangerous, and usually resolves in a matter of minutes, but can be extremely alarming and is often accompanied by terrifying hallucinations.

When people with narcolepsy are tired, they can exhibit automatic behaviour, loosing consciousness but still able to perform routine tasks as if awake, including writing. This can be unsettling and affect confidence and self-esteem. 

In narcolepsy, the presence of obesity is twice that of the general population, most likely owing to a drop in the metabolic rate that occurs following the loss of hypocretin. 

What do schools and teachers need to know?

You will need help to understand what narcolepsy iswhat causes it, and how narcolepsy is diagnosed and treated.

Here you will also find practical advice about living with narcolepsy, including information on the impact of narcolepsy on education and employment

Narcolepsy UK is the UK charity dedicated to helping people with narcolepsy. Please also take the time to learn about us and our work,. We would love you to get involved, and please do become a Registered Member, so that we can keep you informed with all our latest news.

We hope that the resources on this website will help you understand the condition, and how you will need to work with the pupil. However, if there is anything more that you need, then do please contact us.

What else can I do?

Narcolepsy UK are looking to recruit “Schools Advocates”.

This role would involve visiting other local schools to raise awareness by giving a talk and presentation on narcolepsy/cataplexy to students and teachers, particularly following the diagnosis of a pupil. Having personal knowledge of the impact of the illness will give you an ‘edge’ over others.

Training will be given and reasonable travel expenses covered.

If you are interested please contact Liam Sloan at liam.sloan@narcolepsy.org.uk for more details.