Factsheets
The best by far is produced by the National Institute of Neurological Disorders and Strokes, which has a comprehensive guide including symptoms, causes, difficulties in diagnosis and treatment of narcolepsy.
If you would like further reading I'd suggest that you take a look at the online fact sheet produced by Help Guide, another non-profit making organisation. If this doesn't quench your thirst for info, a google search will bring up tons of the same information, written in many different ways!
UK Based Organisations
Organisational support based within the UK is very limited. There are only two sites that I'm aware of are....
Narcolepsy UK have a good database of information, which includes research topics of interests. There is a forum page which although seems to be fairly small in comparison to some sites, it does have an option to chat to other people by area. The organisation also produces an online publication called 'Catnap' to members, which is well worth a read. They have a Facebook page here.
Daily Strength is an online community with over 500 different groups organised by illnesses, with narcolepsy being one of them. This is the only other UK based organisation that I've found and they also have a Facebook page here.
Worldwide organisations
The Narcolepsy Network is an American based organisation with a large online community. It also has lots of information about the condition that maybe of interest. Talk About Sleep, Ben's Friends and Rare Connect all have forums with the intention of connecting people globally.
Online communities
I would recommend that if you are newly diagnosed with narcolepsy and/or cataplexy, that you consider signing up to a couple of forums. Its a wonderful way to chat to others with the condition, many of which are more than happy to answer any specific questions you may have. Narcolepsy can feel very lonely at times, but it doesn't have to. Many of us have questioned, ranted and raved to online friends, safe in the knowledge that the people we are talking to truly understand. As a group (or family of narcoleptics as some people refer to it), we can provide mutual support and discuss things that are really bothering us, without fear of judgement.
Social Networking Sites
It's worth doing a keyword search in social networking sites like Facebook and Twitter. I've only very recently set up profiles as an narcolepsy advocate with both sites and found them to be an easy way to connect with people, using formats that I was familiar with. You can find me on Facebook here and on Twitter here. It's worth knowing that the Narcolepsy community have a monthly #Nchat on Twitter, for people to discuss any issues or areas of interest that they have in real time. Please be aware that some groups are open and may appear in peoples Facebook feeds.
Worldwide Facebook support groups Narcolepsy Support Group, Narcolepsy Network, PWN, Living With Narcolepsy, Narcoleptics, Narcolepsy Friends
Area Specific Facebook support groups Narcolepsy in the UK, Narcolepsy Support Australia - Discussion Group, NODSS (Narcolepsy & Overwhelming Daytime Sleep Australia), Ohio Narcolepsy, Canadians with Narcolepsy, Narcolepsy NZ (New Zealand)
Education and Awareness raising Facebook groups The Narcolepsy / Cataplexy Education Focused Group (list of research papers, guides and articles in the 'File' tab at the top right-hand corner), Helpful Narcolepsy Information, (NAPS) Narcolepsy Awareness and Peer Support, N.R.G (Narcolepsy Resource Group), Autoimmune Awareness Alliance
Facebook groups for children / young people with narcolepsy Children With Narcolepsy, YAWN, Young People with Narcolepsy, Narcolepsy Youth, YAWN Ireland
Facebook groups for those who support someone with narcolepsy Narcolepsy Kids and Parent Support, Married to Narcolepsy, Supporters of People With Narcolepsy, SOUND (support for parents whose children have developed narcolepsy), The Narcolepsy / Cataplexy Education Focused Group (welcomes non-sufferers who wish to learn more about the condition)
Other narcolepsy specific Facebook groups Support *MOMS* with Narcolepsy, Xyrem Support on Facebook, Narcolepsy Penpals, N[Art] Narcolepsy Art, PWN etsy sellers, Rockin' Bods for PWN, Narcoleptic Bloggers, Sleeping Beauty (Narcolepsy Support for Women), Narcoleptic Funnies, Z Head Giggles, Narcolepsy Gamers,
Non-narcolepsy specific Facebook groups Sleep Disorders Support and Advice, But You Don't Look Sick!, Autoimmune Disorders, Sickies Swap, Fibromyalgia Fighters, Fibro Warriors, Hypothyroidism, Thyroid Disease
Multi-media
It's worth heading over to YouTube for a look at some of the information videos that have been produced. Julie Flygare is an American advocate and all round superstar within the narcolepsy community. She's produced a number of videos that I'm sure will be useful to some. Julie has also written a book entitled 'Wide Awake and Dreaming' about her experiences, which can be bought at Amazon. I've only recently discovered this book and although only half way through, I'm finding that her experiences are very similar to my own.
Further Information
Link to List of Narcolepsy Research Papers
Link to List of Narcolepsy Guides / More Info
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