#RareDiseaseDay!

Not only is today the extra day we have in a leap year but it is also Rare Disease Day! Worldwide people have been organising events to help raise awareness about rare diseases to help those in need. There have been a variety of activities, whether it be 2 minute flashmobs, a sponsored event, or an exhibition held in a local venue all of these have contributed to helping raise awareness. BUT lets not stop now, today we've really started to help make others aware of rare conditions but as always...

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1 day till Rare Disease Day!

Tomorrow is the 29th feb and that means it is rare disease day! Whatever you are doing tomorrow to help raise awareness remember to document it, video it, or take pictures and send it to us to go on the blog! Also, if you are on twitter remember to use the #rarediseaseday to get it trending! Still stuck for late notice ideas about how to raise awareness? Watch this video to see how anyone can raise awareness - and it only takes two minutes to do...

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Any artists?

Seeing as the blog got a bit of a freshen up perhaps our logo ought to as well... At the moment it is pretty basic: So if any of you are a dab hand at the old drawing and fancy having go, we'd love for you to sketch a new logo and email it to us! hideandseekid@hotmail.co...

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Bizarre Milestone!

Since it's launch in September the blog has reached 3,300 views today! Now whether it is 3,300 different people all finding snippets of helpful info or a few regular viewers, I am so happy that this blog is reaching out to a community of people that feel they have nobody to turn to and no-one that understands. Well we understand here at HideAndSeek Disabilities and you are not alone! Thanks to everyone, this is just the start... Tweet: @hideandsee...

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New Blog Design!

I thought the blog needed a bit of a freshen up, a lick of paint so to speak. So I chose a new design. What do you think? You can alter the way the design looks by clicking on the classic, flipcard etc tabs! This is your blog as much as mine so I'd love to know your thoughts. So drop us a comment! Tweet us: @hideandsee...

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Jillian's EDS Poster

Couldn't have put it better myself! If you have a poster like this to represent your condition email it to us to be posted on the blog! Tweet us: @hideandsee...

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Petition Time! Get ready to Sign...

Ross has shared some e-petitions that he'd really like people to help get on board with and sign to help make a change and difference. Here's a bit about them  HM Government: Stop and review the cuts to benefits and services which are falling disproportionately on disabled people, their carers and families. HM Government: Stop using Atos and private profit driven companies to assess the disability and health of benefit claimants. Happy clicki...

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How can you get involved? #RareDiseaseDay

Want to know how you can help raise awareness about rare disease? Well February 29th 2012 is rare disease day and there is plenty you can do! 1. If you're on twitter use the #RareDiseaseDay to get it trending worldwide. 2. Send me videos and posts to put on this blog about your experience with a rare disease! 3. Some more easy ideasDisplay posters, images or other awareness raising media such as ballons Distribute stickers and flyers Organise rare diseases events around topics paramount to patients Organise...

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8 days to go!

8 days to go until rare disease day 2012! Jamie O'Brien's Story Jamie O'Brien's ambition is to work in music production and website design. He lives in the North East of Ireland. He's 21 years old and last year he started a course in Creative Media at Dundalk Institute of Technology. A few months into the course, he realised that his condition would make it impossible for...

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Interview with Kate Cross and Byron the dog! (Woof)

If you live in the UK you will most likely have heard of Kate Cross in the news recently who suffers with Ehlers Danlos Syndrome and has Byron the dog to help her with day to day tasks. If you haven't please click to read about Kate in the Mail Online and watch the video of Kate on The One Show. What Byron and Kate are doing is amazing not only does it help...

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Amanda's Poem

Amanda, who suffers with EDS found a way to express her views and feelings about coping with her condition. Win or lose? Day after day, you live your life in pain,Wondering if your old life will ever return again,Everything was so good, your life and dreams planned out,Then suddenly it’s all gone, you want to scream and shout,To survive each day, feels like running a never ending race,But with each stumble and fall you feel a disgrace,Pain, sickness, fatigue, your symptoms always on show,Hospitals,...

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Newspaper article: We need more Byrons!

Your wish is my 100 commands: Talented dog makes the bed, fetches the milk and even gets money out of cash machine for disabled owner Owner hadn't been outside on her own for 18 months before she got Byron Seven-year-old dog fetches everything from milk in the fridge to hot water bottle and knows more than 100 commands As dog owners know, you are lucky if your pooch...

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EDS - "Not being respected when seeking medical care"

"People who suffer with Ehlers-Danlos syndrome, an inherited connective tissue disease, have reported not being respected when seeking medical care. The lack of respect can have an emotional impact on these individuals that can last for many years and affect their ability to seek health care.Ehlers-Danlos syndrome is a condition in which there is a defect in the tissues that provide support to the body’s muscles, skin, and ligaments. This results in unstable joints, which are the result of faulty...

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Rare Disease Day 2012!

Rare Disease Day 2012 - 29th February! This year Rare Disease Day is on the 29th February, there will be events all around the world to advertise and raise awareness about rare diseases on this day. There will be a lot of media coverage across the globe and you can get involved! Rare Diseases Day 2012 in the UK The Royal Holloway University of London will be hosting...

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