Message from the Blogger...

Message from the Blogger...

Dear Readers,

I've been meaning to write a post like this for a while giving you all an update about this blog and why I love writing it. As you can see by my old posts Snippet of my life - Part 1 and Snippet of my life - Part 2 (which I wrote back in 2011 around the time when I set this blog up - so please don't judge them) the part 3 update is well over due! So for that I apologise.

I guess it's taken me this long to write this because I don't usually like to upload posts about me and my life and instead would rather use this as a platform to share info that can help others. But thought considering I often ask you all to share your inspiring stories I should probably share more of mine. So here goes...

I started this blog back in 2011 at the age of 16 after being diagnosed with Ehlers Danlos Syndrome type 3. For those of you that don't know, EDS is currently an incurable hereditary condition in which the collagen in the body is too stretchy resulting in loose ligaments in the joints. This causes a great deal of pain as well as subluxations and dislocations of the joints. But for many sufferers such as myself, EDS is a physically invisible condition and so we look "normal".

I found it hard to comprehend how it could take 16 years for me to be diagnosed with a condition that I was born with and had pretty much always shown symptoms of. But finally after numerous misdiagnosis' and trips back and forth to various specialists I was relieved when I finally received the correct diagnosis.

I realised that it took this long as EDS is not only a rare condition but also an invisible one. Therefore many people with the condition, including myself appear completely fine. So, on one quiet Sunday evening back in 2011, I thought i'd set up a blog about EDS and other invisible conditions to help raise awareness, offer support to sufferers and educate others!

So here we are now - 3 years down the line. Showcasing a variety of posts from interviews, to helpful websites, video links to event pages and I've received almost 50,000 web page hits from you guys across the world, which for such a small blog about such a specific thing is crazy.

We're also on other social media including a Twitter page which has just reached over 1,000 followers.

I cannot thank you guys enough for your contributions, feedback and your interest in what I write about. This blog is going from strength to strength and I've learnt a lot along the way and there is still so much more content to come.

So in a nutshell, for me this blog is about sharing useful tips, links and helping someone else other than ourselves. There is always someone worse off. But I will try to give you more updates like this from time to 

time.

Abi x

For more info about my story, please check out my new website! 

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Rare Disease Day 2014!

In 4 weeks time on February 28th 2014 it is international rare disease day organised by Eurodis. In the run up to this day various events and promotional campaigns are taking place to help raise awareness about invisible conditions. To find out more about the day and to see the all the easy and simple ways that you can get involved just read the rest of this blog post and then visit their website.

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So what is Rare Disease Day?

"Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and by National Alliances and Patient Organisations at the national level.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

The campaign targets primarily the general public but it is also designed for patients and patient representatives, as well as politicians, public authorities, policy-makers, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, more than 1000 events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.

The political momentum resulting from the Day has also served for advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.

Even though the campaign started as a European event, it has progressively become a world event, with over 70 countries participating in 2013. We hope many more will join in 2014. Our objective is for the WHO to recognise the last day of February as the official Rare Disease Day and to raise increasing awareness for Rare Diseases worldwide." - Rare Disease Day Website 

Below is  a message from the Rare Disease Day Ambassador - Sean Hepburn Ferrer. 

Interested in getting involved? Check out this video explaining the information pack available for download from the Rare Disease Day website.

On 28th Feb we shall feature a special blog post about the success of the day and hopefully share some of your stories about how you got involved. So please get in touch and let us know how you're planning to raise awareness!

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HandiNews International

This week's blog post features HandiNews International a useful website for people with all kinds of disabilities. We asked them a few questions about what HandiNews is all about so that we can share them with you!

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The Disabilities Meeting Place to Share and Help Each Other

www.handinewsinternational.com

What is HandiNews International?

HandiNews International is an online resource (website and social media) for ALL who are interested in disabilities, to share information and help each other.

How can HandiNews International help me and other disabled people?

HandiNews is a practical way for you to share your stories on our website and help each other - what you've accomplished, what you've learned, what resources you need, what services you might offer, and comment on what others have done. Everyday our Twitter platform brings you news about current disability issues, successes, and a lot more. Our tweets also tell you what's going on in our website - our viewers' latest stories, our featured news, our calendar of conferences, and links to useful resources.

What is HandiNews' aim?

HandiNews International's aim is to help us better our lives and the lives of each other, through sharing and caring, and to teach others to include and welcome us.

How can people like myself get involved with HandiNews International?

It's easy to get involved with HandiNews International. Just "follow" @HandiNews on Twitter, "friend" HandiNews International on Facebook, and bookmark our website. Then share your stories, information, resources, services, thoughts, comments and questions. We're inviting you! Help others, and help yourself!

Got an idea for a future post? Make sure you follow us on Twitter @hideandseekid, like our Facebook Page or email us - hideandseekid@hotmail.co.uk. The next post will go live on the blog on Friday 31st Jan. See you then!

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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

 - Follow us on twitter and like our FB page

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Emily Yates: Q+A - Part 2

After reading about Emily's incredible story so far we decided to ask her some questions about her involvement at London 2012 and what her plans are for the future. Here is our short Q+A session with her...

1. As a wheelchair user, how did you find the facilities and accessibility at The Games?

I thought it was incredible.  Not only were the facilities great, they were so great that I honestly did not have to put in any extra effort compared to an able-bodied person.  The lifts and toilets were conveniently placed; everything was lovely and flat, with vehicles to help you out if you struggled with distance.  Most of all, though, there was always someone willing to help you out if you needed it.  Such an inclusive, wonderful atmosphere.

2. Would you encourage a disabled person to apply to be a volunteer at The Games and why?

Absolutely, and why not?  Everything you could possibly need will be available to you.  You will make friends that you immediately have a bond with, as you are all volunteering for the same reasons: to have fun, and to make a difference to the success of the event and the enjoyment of the athletes.  I'd even say that I had an advantage working as a disabled volunteer at the Paralympics. I felt that, a lot of the time, I was able to communicate well with athletes who had similar disabilities, and they were equally confident that I would be able to help them out.  My wheelchair also fell apart during one of my shifts, and I couldn't have been in a better location for it to be mended by all the amazing technicians!

3. What is your favourite memory from working at London 2012?

There's so many! Of course, meeting Seb was incredible, as was being mentioned in his speech.  What I remember most, though, is the constant buzz that surrounded London.  Everyone was vibrant and happy; it made working at the Games an absolute joy.

4. What advice would you give to a disabled person that is considering applying for tickets to Rio?

Read the accessible guide I'm writing, which will hopefully tell you all you need to know about making the most of your time there!

5. Tell us a bit about your book 'An Accessible Guide to Rio' and when can we get our hands on a copy?

Right now, the guide is still in the very early stages. The aim, though, is to create a fully comprehensive guide that will help those with varying disabilities to get the most out of their time in Rio. It'll let you know where is good to visit, where you can rest your head after a busy day, and where you can go to party with ease!  Of course, there will be lots of information about accessible transport and tourist attractions, too.  And it won't just be suitable for those with disabilities either.  The elderly and families with children in pushchairs may also benefit from it, too.  If all goes to plan, we are hoping that the guide will be distributed free of charge through disability organisations and networks, so that the guide really does hit its target audience!

Emily's Twitter: @EmilyRYates

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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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INVISIBLE DISABILITIES: Branching Out!

We're aware that a lot of our content has been about invisible conditions that we're most familiar with, that's why we want to branch out and not only educate others but also educate ourselves about the invisible conditions that we know little about!

To do this, we shall feature weekly content about all kinds of conditions with a new post being uploaded every Sunday. Some weeks we shall focus on an individual condition including content ranging from videos to personals stories, facts to useful links whereas in others we shall feature collaborations and events that are happening across the world to help raise awareness!

We really want to branch out and reach as many people across the world as possible educating them about all kinds of invisible conditions and we'd love you to share your stories to help educate us.

Over the next year we shall feature posts about as many invisible disabilities as possible from the picture below. Starting with next weeks post on Fibromyalgia. If you would like to contribute your useful links, personal stories or anything you think others should know about the condition please email it to: hideandseekid@hotmail.co.uk

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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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EDS Awareness Month - Week 2 - EDS Symptoms

This week's post is dedicated to some of the main symptoms that people with EDS suffer with. 

Hypermobile joints

People with EDS typically have loose joints, which means the limbs bend more than usual. This can cause floppy joints in infancy, and some affected children take longer to sit, stand and walk.

Hypermobility EDS is the most common form. The joints can sometimes be very unstable and may dislocate easily.

In other forms of EDS (such as kyphoscoliotic and arthrochalasia EDS), the looseness of the joints tends to be more disabling and dislocations may happen frequently. Joint instability may occasionally lead to osteoarthritis, but this is uncommon and occurs mostly in adults.

Abnormal skin

In all forms of EDS the skin is stretchier than normal. It easily pulls away from the body and springs back once released (this is best tested at the neck, elbows or knees).

Bruising of the skin is common in most forms of EDS because small surface blood vessels may be fragile and break easily.

In classical EDS, skin can also be extremely fragile and can split easily, especially over the forehead, knees, shins and elbows. The scars can be wide and papery.

In the very rare dermatospraxis form of EDS, the skin is severely fragile, saggy and wrinkly. There may be obvious looseness of the facial skin.

In vascular EDS, the skin is often transparent, particularly over the chest, and the veins underneath are easily visible. People with other forms of EDS may also have slightly thinner skin than usual.

Fragile body tissues

Increased stretchiness and fragility of ligaments, tendons and joint tissues makes them prone to overstretching or even tearing (ligaments are tissues that connect bones together at a joint, and tendons connect bone to muscle). Therefore, limbs may be floppy because they are not properly supported.

In vascular EDS, certain body tissues and organs are particularly delicate. Blood vessels, bowel walls and lung linings may be easily torn, causing internal bleeding. Pregnancy in women with vascular EDS can be dangerous because the womb lining is fragile.  

Information taken from the NHS website.

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Jodie is only 19 years old and has Ehlers-Danlos Syndrome, Type 3 Hypermobility. However she wasn't diagnosed until she was 16 after numerous long stays in hospitals at Newcastle and London and multiple major operations. Life is not easy for Jodie or her family yet she still wishes to raise awareness for EDS as it is such a rare, cruel and debilitating disease that has seriously affected her in so many different ways. Jodie has been through so much but faces everything with a belief that she can make a difference and she is the epitome of courage in the face of adversity.


Ehlers-Danlos Syndrome (EDS) has drastically affected Jodie's life. Despite all that she has and continues to face, Jodie is a true fighter and always has a beautiful smile! Jodie feels passionately about helping others and hopes that by sharing her story with you, this will not only help to raise awareness of EDS but will also inspire you to support The Sick Children's Trust; a charity which has been there for Jodie's family during numerous long hospital stays. Please support Jodie's Journey and help us make a difference to unwell children and their families.

Information taken from the Jodie's Journey Website.

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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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EDS Awareness Month - Week 1 - The Types of EDS

Our first #EDSawarenessmonth blog post is dedicated to the different types of EDS that people have. Although some are more common forms than others and many have overlapping symptoms and this is how the different types are considered and defined.

• Classical - the skin is stretchy, soft, fragile and elastic. The joints are loose and flexible.

• Hypermobility - the joints are noticeably loose, flexible and sometimes painful, particularly after exercise. Unlike with other types of EDS, the skin is virtually normal, except for easy bruising.

• Vascular - this is the most severe type, as it means organs and blood vessels can easily burst.

• Kyphoscoliotic - the spine is severely curved in childhood. 

• Arthrochalasia - this causes short stature, fragile skin and joints that easily dislocate.

• Dermatospraxis - the skin is doughy and wrinkly, and tends to sag and fold. This type is exceptionally rare, probably affecting fewer than five patients in the UK. 

• Periodontal - this form resembles classical EDS, but also causes very fragile gums.

Information taken from the NHS website.

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I know what you're asking now...

How can I get involved in helping to raise awareness about EDS?

Well first of all why not visit the Ehlers Danlos Support UK website and download their Awareness Month fundraising pack for some ideas.

Or alternatively send us your EDS stories and tell us how you're raising awareness and we'll feature it in one of our future blog posts. Email: hideandseekid@hotmail.co.uk. Next weeks post shall feature Jodie's Journey.

Here is how Natalia Carrasco is doing her bit, she's creating daily EDS facts and posting them online for us all to share. Please see our previous blog post for the first five facts:

Finally, on May 12th we shall be posting a special blog post dedicated to Fibromyalgia, a condition that a lot of EDS sufferers also have, to show our support for Fibromyalgia International Awareness Day! 

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May is #EDS Awareness Month!

As May is EDS awareness Month every friday we will post a new blog post with updates about how people from across the world are helping to raise awareness! We'll hopefully be featuring all kinds of content from poems, to personal stories, events to images....

So if you're helping to raise awareness about EDS this month please what you're doing by sending us an email at hideandseekid@hotmail.co.uk

Also, Natalia Carrasco is helping to raise awareness by posting 31 facts about EDS for the 31 days in May. We'll be sharing these in all of our blog posts throughout the month. Here are the first 5!

Don't forget to subscribe to our future posts by selecting the subscribe option on the right hand side bar, follow us on twitter and like our Facebook page!

Oh, and our blog has now had over 30,000 hits so a massive thank you to all of you for your support in helping us to raise awareness about invisible conditions!

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Find Me Good Care.

Find Me Good Care ...

Find Me Good Care is a free online resource launched at the end of last year by the Social Care Institute for Excellence (SCIE) – a national charity established to improve care across the UK.

This week's post is dedicated to Find Me Good Care, a charity that aims to help people in their struggle to find the good quality care that their family member or indeed themselves may need. The first stumbling block is often finding where to start? It's especially hard if you don't know what sort of care and support is available or what they specifically need. Find Me Good Care was established to help people in these situations and includes advice and guidance on what to look for, how to pay, what you options are etc, as well as a local directory service where users can provide feedback.

The user friendly website www.findmegoodcare.co.uk can be tailored to individual needs; users can type in their postcode, specify what type of care they are looking for, and the results will return local services and council contacts. There is also lots of useful information for specific care needs.

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Ann Macfarlane OBE, leading Disability Rights and Equalities Consultant: “The main issue with finding and paying for care is that regardless of how much or how little funding you have available, you need good information and advice on spending it wisely. It’s taken me a long time to work out how the system works, which is why something like Find Me Good Care is really helpful for people. Many newly disabled people aren’t as aware of what their options are, and social care is just one of the systems that a person who requires support might need to understand.

Andrea Sutcliffe, Chief Executive of SCIE: “We know that the care system can be confusing and our research has confirmed that most people are unaware of their options - that’s why we’ve created this service. We have brought together comprehensive advice and guidance to help people take those all-important first steps in navigating the care and support system. 

Oh and finally, hope you all have a great Easter and stay tuned for next week's Sunday post!

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Rare Disease Day 2013

This is a post to remember the success of Rare Disease Day 2013 where over 70 countries across the world took part in a variety of ways to help raise awareness about rare diseases. This post will showcase some of the events and highlight the success of the day!

But first... 

So, what actually happened?

On 28th February, thousands of people across 71 countries took part in helping to raise awareness. Support grew across the globe as this was the largest number of countries participating throughout the 6 years that it has been running. A variety of events were held ranging from conferences, to radio shows, sponsored runs to cake sales! Everyone pulled together and worked as a team. The day got great media coverage across the globe and opened up a lot of people eyes to what rare and invisible conditions exist.Click the link here to see how each and every country played their part! 

Also, make sure you check out the Official Rare Disease Day 2013 video below:

If you didn't know about Rare Disease Day this year but wish you had got involved fear not as you can certainly get involved with Rare Disease Day 2014! Keep up to date on their twitter and facebook for the latest info as well as their website!

Next Week's Post will feature the UK service 'Find Me Good Care'.

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Rare Disease Day 2013!

"February 28, 2013 marks the sixth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 24 European countries.

On and around this day hundreds of patient organisations from more than 60 countries and regions worldwide are planning awareness-raising activities converging around the slogan “Rare Disorders without Borders”

Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand!" - Rare Disease Day 2013

There are so many ways you can get involved and help to raise awareness! Just click the link below to find out more about how you can get involved with the following activities:

• Organising an Event
• Share promotional material
• Tell your story
• Get active on Social Media (like us!)
• + Many more ideas about supporting the campaign!

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Our (early) New Years resolution!

We are very sorry for the lack of posts and content recently but there will be a big update coming soon explaining our absence!

We will relaunch the blog in January and will post every Wednesday of each week!

In no way has his blog or this cause been forgotten!

Stay tuned for future updates.

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#iiwk12 - Day 2

Social Sites

Today's post will be about the various social platforms that you can check out to help raise awareness for Invisible Illness Week. As mentioned yesterday you can check out their twitter and Facebook page, but what can you say?

Well here you can draw up some inspiration from some of the many blogs featuring posts about the Invisible Illness Campaign:

Invisible Illness Week: Your Blogs for the Cause

Amy - www.lifeislikeamusementpark.blogspot.co.uk

Witty Gritty Invisible Girl - www.therevertedbutterfly.blogspot.co.uk

Seeking Equilibrium - www.rosemaryl.blogspot.co.uk

Merry - www.hopeismyanchor.com

www.allergictolifemybattle.wordpress.com

These are just a few of the great blogs where you can gain inspiration and knowledge about all kinds of invisible conditions, so make sure you check out the Invisible Illness website and see some others!

And ofcourse make sure you download a blogger badge!

So yesterday I told you to tweet..but what can you tweet about?

Well here are some of the 'Things to Retweet' suggested by the Invisible Illness Website. You can find more facts and statistics on the website!

"Facts to Tweet About Invisible Illness

RT @invisibleillwk #iiwk12 Fact #1 Nearly 1 in 2 Americans (133 million) has a chronic condition. Not U? It’s someone U luv! http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #2 About 96% of illnesses are invisible. No visible signs and no assistive device used. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #5 Plp with illness are young! 60% are between the ages of 18 and 64http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #6 By 2020, about 157 million Americans will be afflicted by chronic illnesses. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #7 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #8 Depression is 15-20% higher for the chronically ill than for the average person. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #11 Invisible illness includes #autism, #bulimia, #migraine pain, #arthritis, #bi-polar disorder #depression. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #15 19 million of plp who are severely disabled do not use a wheelchair, cane, crutches or walker http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #19 Over half of the chronically ill say the worst thing someone can say is “you look great.” http://ow.ly/6Otw"

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#iiwk12 - Day 1

Sorry for the lack of posts recently.. but like many of you we have been engrossed with the success of the paralympics! Just before we get on to the main topic of today, we'd like to echo all of those comments and congratulate all of the Paralympian athletes that took part in the game, they were a true inspiration to all! 

Some of you may know that to show our support for Invisible Illness Awareness week (which is this week!) we are uploading a new blog post every day! So today's blog post is... 

An Introduction

Many of you may have come across Invisible Illness Awareness Week (#iiwk12) but for those that haven't here is a quick recap. It is a week dedicated to raising awareness about invisible conditions. This week there is loads of stuff going on online which you can get involved with to help raise awareness!

Including...

1) Tweet @invisibleillwk with the hashtag #iiwk12 and help get Invisible Illnesses the recognition they deserve! 

2) Tune in to the virtual conferences on the Invisible Illness Week website!

3) Blog about the week and link it to their website where you can read other entries!

4) Like their Facebook page - http://www.facebook.com/InvisibleIllnessWeek

5) Share this image:

There are many more ways in which you can get involved so make sure you check out their website and tune in here everyday this week from 10.00am BST to read our latest blog post about #iiwk12!

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News On Wheels

Before I explain more about 'News On Wheels'.. here is a quick social network update from HideAndSeek.

Make sure you follow us on twitter: @hideandseekID

Like our Facebook Page: HideAndSeek Disabilities

Drop us an Email: hideandseekid@hotmail.co.uk 

News On Wheels...

News On Wheels is an iniativie set up by Blake Leitch who is trying to encourage 'disability journalism'. This would involve disabled people writing content about current issues or offering advice to others in a similar position to themselves. You can find out more about Blake's initiative by checking out his website: News On Wheels and we'll feature more about our involvement with Blake's project soon! 

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Without A Diagnosis Documentary

With our technical issues sorted, our blog is back up and running with new posts up every Friday!

This week we have a special feature about Without A Diagnosis.

I know that many of you can relate to the uncertain scenario of not having a diagnosis for your condition (it took me 16 years to be diagnosed!). After frequent trips to the hospital either us or are loved ones are still left with questions unanswered about our unknown conditions. "Is there a cure?" "What can I do to help?" and most important of all.. "what is wrong with me?".

This documentary by Kat Williams showcases families in need and what help is available out there for them. Most importantly of all, it helps to raise awareness about invisible conditions and how important a diagnosis is when trying to cope and comprehend with your condition.

Now that's enough from me... I'll let the documentary do the talking...

Follow us on twitter: @hideandseekid

http://withoutadiagnosis.wordpress.com/

@withoutadiag 

http://swanuk.wordpress.com/

@swan_uk 

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Linky the EDS Horse!

A few weeks ago a competition took place for people to enter their designs of a horse to help raise awareness for a certain concept they believe in and the design of the winning horse will be on public display in Bristol for a few months to raise awareness. 

Once the entries were in, all people had to do was to vote on Facebook by liking the picture of the horse that they wanted to vote for.

The chosen design was ‘Linky’  the horse, designed and painted to help raise awareness about Ehlers Danlos Syndrome! 

Thanks to all those of you that voted for the design helping to make it become one of the most popular entries. Linky the Painted Pony will be unveiled in Cabot Circus, Bristol City Centre in mid July and will be on display to the public until September. Linky will help to raise awareness of EDS to thousands of shoppers over the summer.

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