Blog: Charity updates

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Position statement on vaccination against COVID-19

10 January 2021

Given the causal link between the deployment of the Pandemrix swine flu vaccination in 2009/10 and the sudden onset of narcolepsy in some individuals, Narcolepsy UK sets out its position with regard to the ongoing vaccination campaign against the SARS-CoV-2 virus.

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Christmas closure

19 December 2020

Narcolepsy UK will officially be closed from Tuesday 22nd December 2020 until Tuesday 5th January 2021.

Any messages received during this period will not be seen until we reopen. We are sorry for the inconcenience but as a small team this is unavoidable.

For emergency contact ONLY please call our Operations Manager - Nicola Rule @ 07920 650552

We would like to take this opportunity to wish you all a healthy and happy festive period and hope for good things in 2021.

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#NarcolepsyStories: Heather Murphy

9 October 2020

One day I was a child who could get up at 6am and stay awake until late in the evening. The next I just couldn’t stay awake. About a year on, I experienced cataplexy quite suddenly. It was not gradual like the tiredness. I would collapse whenever I laughed or even just with the joy of seeing friends.

If a child came to you with seizure-like symptoms wouldn’t you take them a little more seriously?

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#NarcolepsyStories: Lee Martin

6 October 2020

Sleep is as vital as drinking water and people who sleep well simply cannot grasp just how devastating a sleep disorder like narcolepsy can be.

I've had narcolepsy for as long as I can remember. But I went undiagnosed for almost two decades. Then, in my 20s, I had a cataplexy attack for the first time, my muscles suddenly giving way during sex. This was one of the most frightening experiences of my life because I remained conscious but had no idea what was going on and thought I must be dying.

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#NarcolepsyStories: Nikita Tyler

2 October 2020

I had turned 13 and over the summer holidays, I began sleeping in until the afternoon and taking naps for the rest of the day. I put it down to feeling a bit depressed because my best friend at the time had moved away. My mum put it down to me being a lazy teenager. By the time I went back to school in September, the urge to sleep was becoming more frequent and more intense. I remember my eyes starting to sting in a religious studies lesson and I just wanted to shut them. At home, after school, I’d sit down and be asleep at exactly the same moment.

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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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#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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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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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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