Two years ago on Sunday, I won two gold medals in the British Taekwondo Championships. One month later, I became ill. Exactly one year ago today (September 10th 2012) I woke up unable to walk. I couldn’t stand, i couldn’t do anything. I was screaming in pain and i just remember how desperate me and my family felt. My body is now so scarred from my mental health plummeting after my ability to walk left me. I suffer from a rare genetic condition known as Ehlers Danlos Syndrome (EDS). I have secondary illnesses known as Reflex Neurovascular Dystrophy and Postural Orthostatic Tachycardia Syndrome. I want to spread awareness of these conditions. I was 14 years old when I was told that I had EDS; by this point it had already attacked my entire body, causing permanent damage to my hand and taking away my ability to walk. I was scared, i remember not having a diagnosis, not understanding why I could no longer walk. I had only just turned 14 when I took my last steps. I have just turned 15 and I am trying so hard to stick with it. Life is difficult, but throw in something that stops you doing the things you love, and it can be hell. Please, reblog this. I want to spread awareness of this illness that cripples and disables people worldwide.
EDS can take away you ability to walk?!
It can take away most things. I’m in a wheelchair half time now, when I used to just need a cane - and before that, no mobility aids at all. Eventually, I’m likely to be full time in a chair.
It can take away walking and using hands/arms, it can take away your vision, your ability to eat, and many other things. This is what I was ranting about last night, when people try to say ‘it’s not THAT bad’ because no, maybe it isn’t right NOW, but it can get to be that bad. It really can.
EDS is something that can literally take away the use of any part of your body. Collagen is everywhere. With a disorder that breaks down collagen, it has the potential to literally kill.
It can take away brain function. It can cause a person’s heart to explode. It can take away the physical ability to feel - or can cause you to physically feel too much (POTS in a nutshell). It can make your teeth rot more than usual, or make them fall out. It can cause reproductive system problems. It can cause to not be able to eat (already mentioned, yes?). It can cause blindness, deafness, the loss of the ability to breathe… It can make it impossible to stand, sit, or lay down - depending on what it attacks.
The scary part? All of this can happen overnight.
About a month ago, I went to bed, like normal. Just to take a nap. Middle of the afternoon, an hour to myself, so I took advantage of it. When I woke up, my glasses didn’t work right. Sometime within that hour, my corneas had moved again.
This is a serious disorder.