Blog: Charity updates

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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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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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#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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