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.