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EHLERS-DANLOS AWARENESS MONTH – Tiri’s Experience

Posted By Donna Wicks, May 6, 2013

 

EHLERS-DANLOS AWARENESS MONTH – Tiri’s Experience

I’m Tiri Hughes, I’m 14 and I’m the HMSA youth reporter. I am diagnosed with Ehlers-Danlos Syndrome, Hypermobility type (type III) and I am also visually impaired. This month is EDS Awareness Month so I am going to write about how I get on in the sporting world, and how having a disability doesn’t stop me from participating in the sports I like.

I’ve never been allowed to do football, rugby or hockey because of the risk of injuring myself, so when I was at primary school I took part in netball, which was not particularly successful. Apart from the fact that due to my limited sight I had problems seeing the ball, my general coordination with other people wasn’t at all brilliant. As I got to secondary school age my vision started to deteriorate more meaning netball was near impossible. I really wanted to carry on doing sports but I wasn’t really sure what I could do, I knew I couldn’t do football, rugby, hockey, and nearly every other balls sport (with the exception of specially adapted/disabled only ball sports such as goal ball, a visual impairment only game) was completely out of the question. I tried to do athletics but running didn’t go very well, jumping also was pretty unsuccessful and hurt my legs and throwing hurt my shoulders too much. But I did find my muse. Or muses as it turned out!

In year 8 I was picked out by a talent scout to join the south west England disability swimming squad! That was definitely one of the turning points in my sporting life. I had done swimming lessons since I was little, but not competitively. Since then I have competed at two regionals, two open nationals, two junior nationals and recently the British International Disability Swimming Championships, which is also the trial for world championships! And my medal collection has started to break the peg! There have been some hiccups along the way, I won’t deny that. We had to up my asthma medications by a lot because I am allergic to chlorine, and I am terrible at breaststroke because my hips have a tendency to get stuck! I am swimming disability classified for my visual impairment, and I race against visually impaired people who do not have EDS, because dual classifications do not exist, despite the fact I could have the physical disability classification instead if I wanted it, so I am at a bit of a disadvantage. But overall, the amazing people I have met (a LOT of paralympians!), the medals I have won and the experiences I have had make it all very, very worthwhile. When I swim I am on a much more level (although not completely flat) playing field. I enjoy going to training, it is fun and it takes a lot of weight off my joints, so is good for me too!

   Tiri HughesTiri  Hughes, HMSA Youth Reporter. Talks about having Ehlers- Danlos Syndrome and visual impairment whilst being active in sports at a high level.

My other sport is gymnastics. I’ve always loved it, but I started having problems with my feet (turned out to be Severes disease) when I was seven. Even though if I had continued it may have helped it, we didn’t know what it was for a while, so I never really started it up. At 11 gymnastics teams at school inspired me to start up again. So I went to a gymnastics club about half an hour away, in a mainstream class, for about a year.

Then, I discovered on YouTube that there was Disability Gymnastics (formerly GMPD) by coming across a video of a girl who competed in it, who had EDS among other things! I got in contact with her over Facebook and chatted to her about how it all works, and became friends! Within a few months, I started the disability squad at the club as well, the only one in a very large area! With the help of the disabilities coach, I went to National Grades and got a merit, trialled for National squad, got into the school team and competed in the British Disability Gymnastics Championships, and in my category got overall bronze, with a 4th, two 2nds and a 1st. Like with swimming it’s a much more level playing field, and when I compete and train I can say ‘I can’t do that because I have EDS’ or ‘I can’t train today because I have EDS’ without getting a lot of odd comments back. In some ways, having EDS makes gymnastics a bit easier because of the natural flexibility, but the reduced muscle tone and fragile joints do cause their fair share of problems, in the same way that not being able to see the beam does. But it is probably my favourite thing to do in the world.

I’m very grateful I am able to do these sports without having EDS getting in the way all the time, but in some ways, I think without having it, I wouldn’t have the determination to do these sports, to prove I can do it.

Tiri Hughes. HMSA Youth Reporter


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