livingwithdisability: Rare Disease DayMy son has Dravet…

livingwithdisability:

Rare Disease Day

My son has Dravet Syndrome. This is Joe (image description) in the Tardis at the Dr Who Experience, Cardiff.

“Dravet Syndrome is a rare neurological condition causing severe, difficult to control seizures, alongside varying degrees of learning disability and other issues, such as autism, mobility problems, speech difficulties and feeding problems.”

Dravet Syndrome is thankfully very rare, affecting around 1:29,000 to 1:40,000 births in the UK. This means it is often unheard of and the same goes for many other rare conditions. 

But if we put all the rare diseases together, somewhere in the region of 30 million people across Europe are affected by a rare disease.

Rare Disease Day has been held annually since 2008 across the world, on 29th February, itself a rare date, or on 28th February in non-leap years. It is a day to raise awareness among the public and the professional community through a range of events and activities.

 
To raise awareness, you don’t need to do much – just like or reblog this page. 

If you have a Rare Disease post you want me to reblog, message me with a link. I have 6000+ followers :-)

Find out more about Rare Disease Day here:
http://ift.tt/1TLbLXf

Find out more about Dravet Syndrome here http://ift.tt/1OvF51L

Joe also has a trabasack

via Tumblr http://ift.tt/1TLbJyI

theinturnetexplorer: It’s called the Infinadeck, a true…

theinturnetexplorer:

It’s called the Infinadeck, a true omni-directional treadmill designed for Virtual Reality gaming.

via Tumblr http://ift.tt/1oAiM18

theinturnetexplorer: she’s in for quite the surprise later

theinturnetexplorer:

she’s in for quite the surprise later

via Tumblr http://ift.tt/1oAiJTb

abcnews: 106-year-old woman has priceless reaction meeting…

abcnews:

106-year-old woman has priceless reaction meeting President Barack Obama and First Lady Michelle Obama. “I thought I would never live to get in the White House, and I tell you, I am so happy!”

via Tumblr http://ift.tt/1oAiJT1

““Beautiful things grow out of shit. Nobody ever believes that. Everyone thinks that Beethoven had…”

““Beautiful things grow out of shit. Nobody ever believes that. Everyone thinks that Beethoven…
via Tumblr http://ift.tt/1onO77f

livingwithdisability: Wheelchairs are freedom. Every…

livingwithdisability:

Wheelchairs are freedom. Every journalist that uses “wheelchair bound”, needs to be bound by duct tape at the end of a ramp. *evil grin*

(Shared from 
Luis Nok Outumuro on fb)
 

via Tumblr http://ift.tt/1VgqOHa

spoonie-living: annieelainey: Over and over I hear people talk…

spoonie-living:

annieelainey:

Over and over I hear people talk about certain products as though they shouldn’t exist, the ads for these items, are silly, I’ll admit, but the response is almost always aggressively “That is the laziest thing I’ve ever seen!!”, “I’ve lost my faith in humanity!” But if you really consider who could actually use these items, you’d see that are they not only unjustly called “lazy” but there are people in the world whose lives are made better by these products, who benefit from their existence! 

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[Image description: A video still of a person with blonde hair wearing a Harry Potter snuggie and lying in bed. This video is captioned.]

What a great and super important video. Annie highlights some really neat accessibility equipment, too, so be sure to take a look. And the next time someone calls out a snuggie, you can throw this in their face 😉

via Tumblr http://ift.tt/1U370ZH

livingwithdisability: Trabasack review spotted on an Australian…

livingwithdisability:

Trabasack review spotted on an Australian site. – trabasack sales support me so I can write this blog.  My partner invented it :-)

via Tumblr http://ift.tt/1VgqLve

My Fairly Ridiculous Crowdfunder Idea

cagglefrap:

Hello sexy, how are you?
Good. Sit on the comfy sofa, I have an idea I want to share…
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shitposting-sjw-garbage: prokopetz: prokopetz: pairinstability: ma-wile: pairinstability: Remem…

shitposting-sjw-garbage:

prokopetz:

prokopetz:

pairinstability:

ma-wile:

pairinstability:

Remem…
via Tumblr http://ift.tt/1VmYdQf

Brown box graphic that will take you to trabasack.com when clicked