Happy New Year - from HideAndSeek!

Firstly, I'd like to wish you all a very happy new year and hope you've had a great start to 2014! Without trying to sound very cliché by saying 'New year, new me (blog)' I would like this year to be a new start for this blog...

I started this blog back in 2011 as a platform to reach out to those with invisible disabilities & to educate others about existing invisible conditions which most of us are unaware of.

When I was diagnosed with an incurable, inherited condition called Ehlers Danlos syndrome (I'd never heard of it either) after years of pain and numerous doctors visits, I hadn't received a correct diagnosis till the age of 16. I couldn't understand how it could take so long to be diagnosed with a condition that I was born with and why hadn't it been picked up sooner? I then realised it was because EDS is one of many invisible conditions that very little is known about.

Since starting this blog it has reached so many milestones, reaching a global audience with almost 45,000 hits and it has been inspiring for me to hear you share so many of your incredible stories and journeys about the conditions that you face in day to day life yet often get unnoticed.  I hold my hands up, I've promised numerous times to upload posts far more regularly than I have (slaps wrist) but as usual I got swept up in the business everyday life, starting back at uni, working etc etc - but that's enough of my excuses.

So here is my new year's resolution, which you can help me stick too... I will start off by posting on this blog every 2 weeks, on the 1st and 3rd Friday of each month starting today before hopefully starting to upload regular weekly posts. Baby steps.

The content I upload will not be all doom and gloom, instead I want to share inspiring stories, useful websites, video links etc about all kinds of invisible conditions. But to do this I need your help, for this blog to reach its full potential I want to try and reach out to as many sufferers of invisible conditions as possible to offer support by sharing helpful info with each other and act as an extra online support network.

So could you please share this post with as many people as possible as you never know who it might reach and help. Please can you email in any info, stories, video links, organisation names, anything at all which you think may be of use to others to hideandseekid@hotmail.co.uk so that I can feature them in future posts.

Also let me know what kind of posts would you be interested in reading about? Let me know either via email, twitter or FB. But for now I'll stop rambling, I'll just say that I believe...

Together we can help make the invisible, visible. 

 Abi x

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INVISIBLE DISABILITIES #1: Fibromyalgia

As part of our attempt to raise awareness about all invisible conditions we're starting off with Fibromyalgia...

So what is Fibromyalgia?

Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.

The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy – as if someone just “pulled the plug”.

The name fibromyalgia is made up from “fibro” for fibrous tissues such as tendons and ligaments; “my” indicating muscles; and “algia” meaning pain. - taken from Fibromyalgia Association UK

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A video created to help raise awareness about Fibromyalgia:

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Mission Statement: The National Fibromyalgia & Chronic Pain Association unites patients, policy makers, and medical and scientific communities to transform lives through visionary support, advocacy, research and education to develop affordable and accessible treatments and cures for fibromyalgia and chronic pain illnesses.  - NFMCPA 

Local Support Groups in USA and across Other Continents. 

If you're interested in helping to raise awareness about Fibromyalgia then click this link to find out how you can get involved in awareness day events near you, wherever you are in the world! If you're situated in the USA click here to find events in your State!

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Finally, if you'd like to know more information about Fibromyalgia please see our previous blog post about Fibromyalgia Awareness Day 2013!

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EDS Awareness Month - Week 3 - Awareness Videos

As part of EDS awareness month many of you have been doing your bit by creating videos and putting them up online to share with others. There have been so many contributions so it has been really hard shortlisting some of our favourites to share with you but here they are!

British TV Soap Opera - Coronation Street: 

Cherylee Houston who plays Izzie Armstrong in Coronation Street suffers with EDS so when the EDS UK had chance to go and meet the cast they wasted no time in showcasing their support for the cause.

Your Videos:

This is a song called 'The Cure' which was created by a young girl called Kitty Richardson about her struggle with EDS.

This is a video created by  Heather or 'Zebra Wheels' as she's known in the community about her life with EDS.

Our Video Contribution: 

Here is a short film that we created to help raise awareness about invisible conditions!

Here is how Natalia Carrasco is trying to raise awareness, she's creating daily EDS facts and posting them online for us all to share. Please see our previous blog post for more facts:

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Mimi's EDS Story

Sorry for the absence of posts recently... but more updates and posts are to follow soon!

Please watch the video below showing Mimi Newman telling her story about life with EDS and how she is trying to raise awareness about the condition.

Follow us on twitter: @hideandseekid



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