"Narcolepsy UK has loads of knowledge and gives brilliant advice. I don’t know where we would be without them."
Being diagnosed with narcolepsy can raise many issues and concerns. Whether you are a person who has narcolepsy, or you know someone who has narcolepsy, or you are a healthcare professional involved in the treatment of someone with narcolepsy, some of the topics on which you might need advice, and some of the questions most commonly asked, are the following:
What narcolepsy is and the ways it is treated
Is narcolepsy a psychological or mental disorder?
No. It is a neurological disease caused by the loss of nerve cells in the brain that are responsible for the production of a protein that is crucial for controlling and maintaining a normal sleep-wake cycle.
Is there a cure?
At present, there is no cure for narcolepsy but there are several treatments available that lead to control of symptoms and effective management of the condition. Major advances have been made in recent years in the understanding of narcolepsy, producing significant hope for better treatments in the future.
Is cataplexy dangerous?
Generally no. Attacks usually take a couple of seconds to evolve and as patients are usually aware of the situations where they are likely to have an attack, it is unusual to be injured during an attack.
The impact of narcolepsy on young people
Does narcolepsy affect learning and education?
If narcolepsy presents itself at an early age, it can impact severely on education and learning. In particular, the condition can affect concentration, attention span and memory as well as causing lost time through naps. However, there is no direct impact on intelligence.
Children with narcolepsy should be diagnosed as soon as possible so measures can be taken to ensure the condition has as little detrimental effect on their education as possible.
To read more, see our resource for Narcolepsy and Education.
The impact of narcolepsy on day-to-day life
If I am diagnosed, will I be able to drive?
In the UK, you will be permitted to drive provided that your symptoms are sufficiently well controlled. This will be assessed on the basis of medical evidence, usually a report from your specialist. Most people living with narcolepsy are aware of when they feel sleepy and take care not to drive long distances without taking planned naps.
People diagnosed with narcolepsy must inform the DVLA of their condition. If DVLA is satisfied that symptoms are adequately controlled a fixed term driving licence is issued, which is reviewed every few years, and renewed subject to continued adequate control of symptoms.
What impact will it have on my job?
Narcolepsy should be regarded as a life-long condition and has a potential impact on every aspect of daily living. Whilst there are certain occupations that people with narcolepsy should not undertake on Health & Safety grounds, with appropriate help and support many people with narcolepsy are able to lead fulfilling professional lives. It is important to note that people with narcolepsy may not be discriminated against as a result of their condition.
Help and support
Where can I find more information?
Use the resources on this website to learn about narcolepsy. Engage with us and with other people with narcolepsy through social media. Attend our events and conference to meet others, share experiences and learn from each other.
Am I entitled to benefits?
People with narcolepsy may be entitled to various benefit payments including Personal Independence Payments and Employment and Support Allowance.