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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The Jolt Trust Charity

If you read our inspiring guest blog posts from Emily Yates you'll be familiar with the charity organisation she mentioned called Jolt Trust. We're really interested in what this small charity offer to disabled people and what they have already achieved. So we'd like to share some more info about the Jolt Trust movement with you...

"Since 1983, the Journey of a Lifetime Trust (JoLt) has been making a positive, lasting difference to the lives of hundreds of disabled, ill, abused and neglected young people. JoLt is a small charity run on a totally voluntary basis by a group of ordinary people with families and careers. It was set up in 1983 to make a positive lasting difference to the lives of disabled, ill, neglected and abused young people.Every two years, we organise expeditions all over the world for groups of young people (from fourteen to twenty one years) with significant disadvantages. All long to travel to far-away places. JoLt makes their dreams come true." - JoLt Website

Sounds amazing right? Fancy getting involved?

Well there are many ways you could help to get involved with this charity and their work. First of all is by donating so that they can continue to offer these fantastic expeditions for the disabled youngsters in years to come. If you'd like more information about this please click here.

Or you could nominate a youngster to be considered for taking part in the 2014 expedition across Africa!

"We are busy planning our next journey for July / August 2014. We aim to travel from the heart of Africa to the Indian Ocean. We will start our travels in Zambia, before heading through Botswana, South Africa, Swaziland and arrive in Mozambique a month later. We will take in the mighty Zambezi River and Victoria Falls before entering Botswana, the gateway to the Okavango Delta. South African highlights include the world famous Kruger National Park and Blyde River Canyon. The Kingdom of Swaziland will be the location for a community project and some exciting trekking, before arriving on the beaches of Mozambique to complete our journey." - JoLt Website

For more information about how to nominate please click here!

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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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Emily Yates: 'Journey of a Lifetime' - Part 1

- Emily and Seb at London 2012

- Emily and her friend Tom with 

The One Show's Alex Jones

Me and my twin sister, Lucy were born 10 weeks prematurely, and later diagnosed with Cerebral Palsy, after not being able to walk for quite a while when we were young.  My early memories are of constantly walking up and down the stairs at our local Children's Development Centre to try and strengthen my legs.  We had a lovely childhood, and loved school.  I don't remember our disability ever affecting us, how we made friends, or our outlook on life.

At 9 years old, I had an operation to improve my walking, as it was getting so bad that my knees started to knock together and my posture was worsening.  I had Derotational Osteotomy where my thigh bones were cut and pinned back together.  My hamstrings were also lengthened.  This huge procedure took quite a while to recover from, and I lost all the muscle tone in my legs, leading me to use a wheelchair.  I have no recollection of this change ever really bothering me; I was actually much more mobile with the wheelchair, and I started playing wheelchair basketball locally and at county level.  I remember my wheelchair even being quite cool when I started secondary school!  Again, apart from a few issues with school trips and risk assessments, my time at school was so enjoyable. I did well in my GCSEs, and decided to stay on at 6th form, with the hope of attending University.

In the summer of 2008, at the age of 16, I as given an amazing opportunity which would change my life forever. I was nominated by my school to go to southern Africa (Namibia, Lesotho and South Africa) with the JoLt Charity, an incredible organisation that takes disabled or disadvantaged young people on a literal 'Journey of a Lifetime'.  Here, I met people with similar life experiences and similar ambitions.  Together, we did things that we'd never imagined would have been possible.  We rode elephants, went cage diving with sharks, and climbed some of the highest sand dunes there are! I immediately got the travel bug, along with 30 life-long friends.

After JoLt, I was determined to travel some more. After my A Levels, I went to the Sinai Desert with the Yorkshire Schools Exploring Society, and was the first wheelchair user they'd ever taken on a trip.  I was also the first wheelchair user to ever cross the desert on camel! Whilst in the area, we also completed our PADI Open Water Scuba Diving course - a real challenge for me - but it was so worth it.

After Sinai, I moved to London after being accepted to study English at Queen Mary, University of London.  I totally fell in love with London, and all the opportunities it has to offer, and I adored student life!  It was half-way through this fresher year that I was accepted to move to Melbourne, Australia for a year studying abroad.  Going to the other side of the world was quite a scary thought, but I was ready for the challenge. In Australia, I snorkelled at the Great Barrier Reef, volunteered at a juvenile prison, and met another wheelchair user, Alex, who was to become my travelling partner for the year.  Of course, I managed to fit a little study time in, too...  Urging myself to grab such a once-in-a-lifetime opportunity like moving to Australia is something that I'm so proud of.  It would have been so much easier to sit back and stay in my comfort zone, but taking that risk was the best thing I've ever done.

I returned to London in July 2012, after heading from Australia to America to intern at the United Nations in New York.  It was at this time that I received a call from the London 2012 team, saying that my application to be a Games Maker at the Paralympic Games had been successful.  The day before my first shift, I got another call, asking me if I would talk at a press conference the following morning.  I said yes, thinking nothing else of it.  But, lo and behold, I arrived that morning to be greeted by Lord Sebastian Coe - we'd be doing the conference together in front of loads of journalists!  I told them all how amazing the Games had been for those with disabilities, 'lifting the cloud of limitation' on everything that they thought was previously possible.

I then worked at the Excel arena, working as a Games Maker in the warm-up team for Wheelchair Fencing.  I absolutely loved it.  We got the chance to take athletes out onto the field of play, and then take photos with them and their medals!

Seb then went on to use my 'cloud' quote in his closing ceremony speech of the Paralympics.  My phone was going mad with calls and texts - I couldn't believe it!  My friend Tom and I had previously spoken about how great it would be to write an accessible travel guide for the next set of Games at Rio 2016, and this was suddenly our opportunity.  I quickly got in touch with Seb and the team at the British Paralympic Association, both of whom have supported my ambition to create the guide right from the start.  I am now writing the guide in association with Dorling Kindersley and Rough Guides.  We are currently trying to raise sponsorship so that we can distribute the guide free of charge to those who will benefit the most from it. I'm also about to start a Master’s degree in Disability Studies at the University of Leeds, and I'm hoping that my dream to help others with disabilities to embrace the idea of travelling the world really makes a difference!

I am so fortunate to have been given so many wonderful opportunities, and each one has led to another one.  To anyone reading this, the only advice I can give is to urge you to say 'yes' to any exciting offer that is made to you; you never, ever know where it might lead!

 - Twitter: @EmilyRYates

Next week's blog post will feature a short Q+A with Emily about her experiences at London 2012 and her plans for the future - so stay tuned!

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