My name is Madison and I am 10 years old. I have many weird things happen with my joints and my body over my life more consolidated in the past few years. My mum has thought in the back of her mind for many years that I may have been hypermobile given how my knees lock back and a couple of other quirky things and positions I was able to do, however it wasn’t until this year after a couple of repeated issues with random swelling and fluid on my knee and some issues with my elbow was she able to get a referral to a specialist.
When I was first diagnosed with EDS I was relieved, now me and my family know what was wrong with me, but I was a little scared because I didn’t quite understand what EDS Hypermobile meant.
Living with EDS is tough, first your body tires a lot easier than most people, so when you do sports you get tired a lost faster than your peers. Also when you do everyday stuff your body/joints can hurt. For example my knees hurts a lot whether it be playing, running, walking etc.
Sometimes EDS is a bit annoying because when I wanted to play Rugby, because I had EDS and the risks to my body I couldn’t do it.
Another reason why it can be very frustrating to have EDS is because just by looking at someone you cannot tell they have EDS and when you get tired people think and tell you, you are being lazy and that you just don’t want to put the effort in.
If I had control of the country for a day, I would smatter the nation with ramps, lifts and curbs. Going deeper into the issue, I would make access a priority in architecture and businesses. Work environments would receive funding for disabled employees and schools would bring disability into education. I would delete every piece of obvious "inspiration porn"(see below)* and replace it tenfold with representation in mainstream media. I would make it mandatory for any new houses built to have options for future adaptions - in the likelihood that the inhabitants became disabled themselves. Of course I would put every effort in to save the NHS - which is this country's biggest redeeming quality, something to protect. And hopefully, pave the way for young disabled people like myself to be given more options for their future, and not have to fit into a society that shows unending reluctance to accommodate for them.
"The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. Connective tissue lies between other tissues and organs, keeping these separate whilst connecting them, holding everything in place and providing support, like the mortar between bricks. In EDS, a gene mutation causes a certain kind of connective tissue – the kind will depend on the type of EDS but usually a form of collagen – to be fragile and stretchy. The stretchiness can sometimes be seen in the skin of someone with EDS; individuals with the condition may also be able to extend their joints further than is usual – this is known as being hypermobile, bendy or double-jointed. As collagen is present throughout the body, people with EDS tend to experience a broad range of symptoms, most of them less visible than the skin and joint differences. These are complex syndromes affecting many systems of the body at once, despite this EDS is often an invisible disability. Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family."
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| Recovering in hospital |
Hello, my name is Christina. I'm 22 and i’m an artist, YouTube vlogger, writer, lover of theater, and I also happen to have a chronic illness. 
Today I've still been in quite a bit of pain but I couldn't have a lay in because I had to be up for my new wheelchair delivery (I've got a more lightweight one now that should be easier to push more independently)FND symptoms are poorly understood and can be debilitating. -Dr. Jon Stone
