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Sunday, 22 April 2012

Yesterday, Saturday 21st April, I was part of a group of about 20 people that initiated a worldwide trend.

If we can get as much twitter coverage as possible on Friday 4th may and tweet with #invisibledisabilities we can help raise awareness about all the invisible conditions!

PLAN: At 6pm GMT on Friday 4th May tweet with #invisibledisabilities to raise awareness! Lets see how many people we can educate about our invisible conditions.

You can use this generic tweet: Help raise awareness about #invisibledisabilities! RT 

Or even better think of your own - including your invisible condition!

E.G. Helping to raise awareness about EDS and other #invisibledisabilities!

So with 12 days to go, let's get as many people as possible on board with this:
  •  tweet about the day
  •  send emails to charities that support your condition - get them on board.
  • Tell your friends and family
  • Retweet
But most importantly tweet #invisibledisabilties at 6pm on 4th may and see if we can get it trending!

The more people involved the more we can make a difference and raise awareness about #invisibledisabilities! 

Tuesday, 10 April 2012

We can't find a specific day that is dedicated to Invisible Disabilities! So we created our own one.

4th May is our #invisibledisabilities day!

Aim: Raise awareness about invisible disabilities

Who: You and everyone else we can get on board!

  •  In the lead up to the 4th May and definitely on that day tweet with the #invisibledisabilities - and educate others about your condition! The more people that click on this hashtag - the more they can find out about all sorts of invisible disabilities!
  • Tell your charities - get them on board! They have the power to help spread our message.
  • Blog about it on your blogs and let your followers know!
  • Share the image pasted at the top of this post!
  • Tweet, facebook, share google+ - whatever social platform you use - you can get involved!
  • Even tweet celebs! (worth a shot..)
Nothing you do is too little or too small, it all helps to raise awareness about the 45+ invisible disabilities that we need to educate others about!

Friday, 6 April 2012

There are loads of Invisible Disabilities out there that we know little about so we want you to educate us about your condition!

We're starting with the letter A, if you have any of the below drop us an email describing your condition and how it affects people!

Anxiet Disorders
Asperger Syndrome

Thursday, 5 April 2012

"I've learned now how it's quite common for the parents of EDS sufferers to be accused of child abuse but, at the time, it came across as quite scary."

"A MOTHER was suspected by social services of abusing her children – until they were diagnosed with a rare disease which makes them susceptible to bruising and bleeding.
Abi Willshee said she was "very worried" after being visited by officials – and still finds herself telling strangers about her children's condition to stop them jumping to conclusions.

Both she and two of her children have been diagnosed with Ehlers-Danlos Syndrome (EDS) – a genetic disorder estimated to affect one in 5,000 people.
But, in the months before the diagnosis was made, Abi, 26, did not know why she and her sons were bruising easily, suffering from nosebleeds and dislocating their joints.
She was pregnant with her fourth child when the diagnosis was made and said she was relieved to get answers but devastated to learn two of her children had inherited her condition.
Abi, of Swadlincote, said she had planned to get sterilised to stop her passing the condition on again – but then discovered she was expecting a fifth child, who will be born in July.
She said: "I've learned now how it's quite common for the parents of EDS sufferers to be accused of child abuse but, at the time, it came across as quite scary.
"I completely understand why they were concerned and it still worries me now when people see the children with bruises. I'm terrible at telling people about their condition because I am paranoid.
"Once we were diagnosed, we never heard from social services again about it, so I guess we're quite lucky. But I was so distraught about giving the children the condition – and it took me a while to get my head around it."
Single Abi said her sons, Jamie Smith, eight, and Ryan Smith, seven, had been diagnosed, while daughter Carly Titterton, four, and youngest son, nine-month-old Leroy Titterton were still too young for tests.
She said: "Carly doesn't tend to bruise but she is quite flexible, which can be a symptom, so she will be re-assessed at five, but Leroy is exactly how Jamie was at this age. Shortly after he was born, he sucked at his own arm and left this huge bruise, which took about two weeks to disappear. He's also quite floppy and joints tend to click and grind.
"It worries me but it's a waiting game at the moment. I don't know whether to wrap him up and protect him. But I don't want him to stop being a normal kid either."
EDS is caused by a defect in the collagen, or connective tissue, which is the main building block in the body. Collagen provides strength for the different parts of the body. Easy bruising accompanies most forms of EDS, as does increased joint mobility and loose joints that are prone to dislocation. Pain is also common in sufferers.
Some types of EDS can be life-limiting but Abi and her children's condition is not thought to be, although it will remain with them for the rest of their lives. Pregnancy can also be life-threatening for EDS suffers.
Abi, of Brookdale Road, said: "I was born with it but I didn't show many signs of it as a child. But, after having my first child, I started to suffer from backache, which the doctors just associated with having been pregnant. Whenever I dislocated any of my joints, I would just put it down to being clumsy.
"But, a few months before we were diagnosed, the children went to see a paediatrician who picked up on the bruising. The next thing I know, social services were investigating.
"They made a couple of visits and spoke to the children but the paediatrician also referred us to a geneticist. Because I was pregnant, we were rushed through quite quickly and got the diagnosis.
"I was also worried at the time because I thought the boys were possibly being bullied. The diagnosis pieced everything together and made life make sense but I was obviously gutted."
Abi, who is 22 weeks' pregnant, said she had always been concerned about Jamie from birth, while she started to worry about Ryan when he was 18 months old.
She said: "Jamie would always be wobbly on his feet and, if he fell over, he would get an instant bruise, while Ryan was better on his feet but his skin was fragile and he'd get nosebleeds. When he was 18 months old, he slipped in the bath and bumped his face but, although it was nothing much, the skin near his eye split open.
"I never wanted my children to be ill and I'm always worried about them. Sometimes, when my eldest comes home, he will sit down and cry because his ankles hurt him and there's not a lot I can do."
Abi, whose weeks are filled with hospital appointments for her and the children, said she was hoping to give birth to her fifth child by caesarian and get sterilised at the same time.
She said: "Labour is usually quick but, last time, I was taken to a hospital where no-one knew about my condition. I lost a lot of blood and the doctors and nurses were quite panicked. It wasn't very pleasant. Not a lot is known about EDS, which means it's hard for people to get diagnosed or get the right care."
She added: "When I was pregnant with the others, I was quite excited and went out to buy them things but I can't quite imagine this baby. I know it's a boy but, because I now know more about what's involved, I'm worried.
"But the children are happy. I have to think about what we can do together to keep them safe, with contact sports and things like that out of the question, but I guess they don't know anything different."
For more information about EDS, visit www.ehlers-danlos.org" - taken from This is Derbyshire

Sunday, 1 April 2012

I've been invited to meeting in London on Tuesday 3rd April about filming a campaign video about how chronic pain and EDS affects people to raise awareness. Once filmed the video shall be featured on the UCH website for all to access including teachers, parents and pupils.

In the meeting we shall discuss how life with chronic pain and EDS affects us.

So if you suffer with either of these conditions, are there any thoughts and suggestions that you'd like to be included?

Let me know either by commenting or emailing at hideandseekid@hotmail.co.uk