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I was so young when I began to develop narcolepsy and cataplexy – just five – that I don’t remember much apart from the teachers telling me off for sleeping in class. At a meeting about my sleep, a teacher told my mum that I had slept through so much that I would not amount to much academically. I had some friends, but I couldn’t go to their houses as they were scared of having me over. I became a recluse. I cried a lot. I hated my narcolepsy. 

I wanted to show the teachers that they were wrong to write me off.

When I was at school, particularly in sixth form, I would take a nap everyday after school. I would really struggle to stay awake all day and would usually fall asleep in the car or on the bus on the way home. I always felt fatigued, something I and others often put down to ‘hormones’, staying up too late or my vegetarian diet. My sleepiness became my ’thing’, a defining feature. There are countless times when I fell asleep by accident when alone and I would wake several hours later.

Nobody knew what was happening to me. I started to experience an array of symptoms such as excessive daytime sleepiness, frequent loss of muscle control in my legs, arms and neck as well as slurred speech. I visited hospitals all over the country seeing different specialists, including a thyroid specialist, an ME specialist and several sleep disorder specialists, with myasthenia gravis even being investigated. Eventually, eighteen months after the onset of symptoms, I was diagnosed with narcolepsy and cataplexy at the severe end of the spectrum.

We at Narcolepsy UK are excited to share with you new research that aims to improve how we help children with narcolepsy in the future and, more importantly, how you can get involved.