World Narcolepsy Day 2021

World Narcolepsy Day 2021

I always end up missing these types of awareness-raising dates because I don’t find out about them until usually the exact day, then I feel a responsibility as someone with narcolepsy (or said other condition) to write something really profound, or to write something very informative. This is especially true with narcolepsy, because I am in the process of writing an essay about what my GP refers to as the “Pandora’s Box” of my neurological diagnoses. I then don’t have time or can’t figure out what to say, miss the event, and another year goes by without me saying or doing anything in relation to any of my conditions.

 

So here it is, still 2 days late, so let’s call this World Narcolepsy Awareness Week rather than Day.

 

You have homework this week. Your homework takes about 5 minutes. All you have to do is Google ‘Narcolepsy’ and click on a scientific or charity-based web-page. I have included some links below as examples, making ti even easier for you. I would like you to learn one thing you didn’t know about Narcolepsy and share it with me, either in an email, a comment, a message or on your own social media using the hashtag #WorldNarcolepsyDay

 

Links

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

https://www.nhs.uk/conditions/narcolepsy/

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet

 

Further Reading

If you want extra homework points (i.e. a free sticker sent to you in the post) here are some books by Neurologists that I have found really interesting in terms of narcolepsy/cataplexy. They are also just great fun to read because neurologists, for whatever reason, all seem to be slightly bonkers in a good way.

I was so surprised by my diagnosis, and it turns out I knew absolutely nothing about what Narcolepsy actually is, how it works or what the actual practical symptoms are. All I could think was, “I don’t fall asleep in my porridge so how can I have narcolepsy?” In fact, below is a photo of a notebook I found from 2018 when the concept of Narcolepsy was first mentioned to me by my neurologist, before I went to the sleep centre.

Image Description: A photograph of a two page spread of a dotted journal notebook. On the right is a sticker of a skull with a brain poking up on the top. On the left is the word Narcolepsy in bright blue pen, next to a doodle of a bright pink and blue cloud. there is a list of things that I found out about Narcolepsy from googling, and on the right is a list of things I wanted to research more and things I wanted to ask my neurologist more about. Will be writing these up in full soon!

The information available is few and far between. The Oliver Sacks books below are more about neurological “atypicalities” in general, but I think are really wonderful at exploring how complicated and fun our brains are in a non-pathological way.

if you read any of the below, or are interested to hear more, please don’t hesitate to get in touch ellie@stillill.uk

 

The Nocturnal Brain by Guy Leschziner

https://blackwells.co.uk/bookshop/product/The-Nocturnal-Brain-by-Guy-Leschziner-author/9781471176357

 

Hallucinations by Oliver Sacks

https://www.waterstones.com/book/hallucinations/oliver-sacks/9781447208266

 

The Man Who Mistook his Wife for a Hat by Oliver Sacks

https://www.waterstones.com/book/the-man-who-mistook-his-wife-for-a-hat/oliver-sacks/9780330523622

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