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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Interview with Sarah Franklin

13 January 2021

In Sarah Franklin’s latest novel – How to Belong – one of the main characters has narcolepsy and cataplexy. Narcolepsy UK asked Sarah about the book, her motivations for writing about narcolepsy and how she set about researching the condition.

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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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Important information about Modafinil and pregnancy

17 November 2020

The Medicines and Healthcare products Regulatory Agency have issued a drug safety update regarding the use of Modafinil during pregnancy:

"Modafinil potentially increases the risk of congenital malformations when used in pregnancy. Modafinil should not be used during pregnancy and women of childbearing potential must use effective contraception during treatment and for 2 months after stopping modafinil."

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Adapting to support during the pandemic

26 October 2020

Narcolepsy UK - Adapting network meetings during the coronavirus pandemic

Narcolepsy UK has been running volunteer coordinated network meetings all over the UK successfully for many years. Due to the government's current restrictions on group gatherings we have been unable to run our meetings as normal. We have had to adapt so that we can continue to provide support that network meetings provide.

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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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