Having narcolepsy impacts on every aspect of a child’s life, and the lives of parents and other close family members.
What is narcolepsy?
Narcolepsy is a chronic neurological condition characterised by excessive daytime sleepiness and, often, an array of additional symptons, including (but not limited to) cataplexy, sleep paralysis, halluncinations, sleep fragmentation, vivid dreams, poor memory, automatic behaviour and obesity.
Narcolepsy is a disability that affects around 1 in 2,500 people, approximately 30,000 people, in the UK.
There is currently no cure, although medication and lifestyle changes can make life more manageable.
Idiopathic hypersomnia shares some of the same symptons as narcolepsy, although its cause is no yet known.
All people with narcolepsy experience excessive daytime sleepiness (EDS), characterised by persistent and overwhelming sleepiness during the daytime. The pressing need to sleep usually builds over minutes, but some people with narcolepsy can also experience “sleep attacks” where the transition from wake to sleep occurs without warning.
The majority of (but not all) people with narcolepsy will also experience cataplexy, a sudden loss of muscle tone triggered by intense, often positive, emotions such as surprise or laughter. 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, to paralysis of skeletal muscles and eventual collapse. Importantly, a person experiencing cataplexy will remain completely conscious (in contrast to sleep or epilepsy).
When people with narcolepsy are tired, they can exhibit automatic behaviour, loosing consciousness but still able to perform routine tasks as if awake.
Many people with narcolepsy also experience sleep paralysis on a regular basis, waking up to find themselves unable to move. This state will usually resolve in a matter of minutes, but it can be extremely alarming and is often accompanied by terrifying hallucinations.
In narcolepsy, the prevalence of obesity is twice that of the general population, most likely the result of a drop in the metabolic rate that occurs following the loss of hypocretin.
You may need further help to understand what narcolepsy is, what causes it, and how narcolepsy is diagnosed. You may need guidance in relation to the various treatments that are available.
Help for families
In this article, we list some sources of information that may be helpful to families including a child with narcolepsy.
The official UK Government website www.gov.uk includes numerous resources that may be helpful. For instance:
- Help if you have a disabled child contains details of services that may be available from your local council to help with your child’s needs.
- Disability Living Allowance (DLA) for children may help with the extra costs of looking after a child with a disability such as narcolepsy.
- Disability rights in education outlines the rights of disabled students and the obligation of education providers to make adjustments to ensure that disabled students are properly supported.
- Help with home to school transport provides access to your local council’s website, with information about help with the cost of travel to school and other types of financial help and support.
A charity specifically focused on families with disabled children is Contact, whose website contains extensive information on benefits, children’s social care, education, and local support groups.
The website of Disability Rights UK contains may useful resources, including a large number of downloadable Factsheets and Guides as well as an online shop where more comprehensive booklets are available for purchase, some at very modest cost.
Who is Narcolepsy UK?
We are the charity devoted to helping people with narcolepsy, their friends and families, and helping schools, employers and others to understand about the condition. Please take the time to learn about us and our work, and please do become a Friend of Narcolepsy UK, so that we can keep you informed with all our latest news.
We would also be delighted if you were to attend one of our events, especially our annual conference.
This Narcolepsy UK website contains other resource pages that will be helpful to you, for instance: