Blog

Keep up to date with all the latest news from the world of narcolepsy, and some of the things we are doing to help.

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#NarcolepsyStories: Louie Gray

29 September 2020

I am 31. It is now very obvious to me that I have had narcolepsy and cataplexy my whole life. I am still waiting for a formal diagnosis. It sickens me to think of the adults – the parents, the teachers, the doctors – who watched a child unable to wake up, who looked on at a child who’d collapsed and did nothing but scream at him.

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#NarcolepsyStories: Heather Korbey

25 September 2020

I was eight years’ old when I got chickenpox. Like any child with a common virus, I went back to school after two weeks but I began to fall asleep a lot in class and it soon became clear to my teachers and parents that something was wrong.

My GP referred me to Southampton General Hospital in the same month, where I spent two weeks under observation. I slept almost continuously while the doctors ran tests but they could find nothing wrong with me except the need to sleep, so I was moved up to see a consultant.

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Welcome to World Narcolepsy Day!

22 September 2020

Today (September 22nd) is the second annual World Narcolepsy Day. This day is dedicated to raising awareness of narcolepsy on a global scale. Established by 24 patient advocacy organisations across 6 continents in 2019, World Narcolepsy Day unites the international narcolepsy community to inspire action, increase public knowledge, and elevate the voices of the 3 million people living with narcolepsy worldwide.

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#NarcolepsyStories: Nicole Hirst

22 September 2020

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.

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Infographics to share

19 September 2020

With World Narcolepsy Day just around the corner, why not take the time this weekend to have a look at some of the narcolepsy infographics we have available. They are all free to share around on social media, which is a great way to help spread awareness!

https://www.narcolepsy.org.uk/resources/infographics

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#NarcolepsyStories: April Atkin

18 September 2020

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.

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New Narcolepsy Awareness Video

16 September 2020

The Nederlandse Vereniging Narcolepsie have shared with us a link to a YouTube video for narcolepsy awareness they have recently uploaded. They have done this for World Narcolepsy Day 2020 (Sept. 22, 2020) as part of their ambition to raise awareness of narcolepsy on a global scale.

https://www.youtube.com/watch?v=TQsOXLYRBgo&feature=youtu.be

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#NarcolepsyStories: Megan Wall

15 September 2020

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.

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#NarcolepsyStories: Liam Gordon

11 September 2020

When walking home after a full day at university, I began to notice my knees buckle for a split second and there was nothing I could do. In that moment, it felt as if my whole body was about to give way; then the next thing I knew I was completely fine. I had just started my fourth year studying chemical and process engineering, the workload was high and beginning to get the better of me. At home, I might try to watch a film, but would be overwhelmed by a need to sleep and be unconscious within the first five minutes.

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Participate in a study - Situational Sleepiness Scale

10 September 2020

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.

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