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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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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Glimmer of Hope photography competition

10 September 2020

Same but Different is a not-for-profit organisation which uses the arts for positive social change by working in partnership with organisations, communities and individuals to highlight inequalities and bring communities closer together.

The Glimmer of Hope photography competition is an opportunity to visually express the hope that exists for people affected by rare disease. The deadline also happens to coincide with World Narcolepsy Day.

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Thanks to Aimee for a big fundraising effort

8 September 2020

We would like to congratulate one of our young volunteers, Aimee Stephen, on raising £1,487.29 for the charity by hosting an 80's night/disco and setting up raffle stalls at various local galas.

Well done Aimee and thank you for your support!

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No 2020 Conference, but World Narcolepsy Day is still happening

2 September 2020

We are very sorry to confirm that due to the ongoing pandemic situation and the need to protect the health and safety of the public, Narcolepsy UK are unable to host a conference this year. The annual conference has been a feature of Narcolepsy UK activity for decades and we did not take this decision lightly. We are aware that the annual conference is a great source of support to many people, and something that many look forward to. We hope to be able to welcome you all again next year.

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Obituary of William Dement

4 August 2020

Sleep scientist William “Bill” Dement, often referred to as “the father of sleep medicine”, has died at the age of 91. During his lifetime, Dement made many contributions that have transformed research into narcolepsy, he helped create the field of sleep medicine and his activism began a wider discussion about sleep and society.

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DVLA Covid Update

2 August 2020

As a result of the impact of the COVID19 pandemic, Ministers at the Department for Transport have agreed to adopt a temporary measure to assist drivers in complying with the driving licence renewal requirements.

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Has the pandemic made your sleep worse?

22 June 2020

COVID-19 has caused disruption to many aspects of our lives and sleep is no exception. In a recent survey carried out by researchers at King’s College London and Ipsos MORI, two thirds of people report that their sleep has got worse since lockdown in March. Around half of the population find their sleep more disturbed and just over one third of people surveyed are having more vivid dreams than normal.

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