When I were about 13 years old I had a flu like virus and after that I got tired very easily and my joints ached. The most pain was in my knees, the left one being worse and my knees got worse until I struggled to walk. I weren't given any pain relief and I were apparently attention seeking.

I missed alot of school that year because I had to move from one classroom to another for each lesson and if I were downstairs and the next lesson was upstairs I wouldn't get there until 10 or 15 minutes into the lesson. The teachers didn't punish me for being late but most of them wouldn't tell me what work I were meant to be doing and if I were caught talking to a classmate to find out what I were meant to be doing I would get into trouble. Other kids who couldn't manage the stairs because of a disability had their classes organised downstairs or they would work alone in the library with the teacher coming downstairs to explain what they were meant to be doing. It wasn't ideal but at least the shool did try to help them. I thought then as I still do now that it was thought by the teachers that I were attention seeking.

After about a year my knees started improving and my right knee almost got completely better. My left knee I still had problems with but it was much better than before.

The doctors encouraged me to exercise more telling me swimming and cycling are particularly good exercise. Well I never have been able to swim so it had to be cycling.

I took up cycling and my left knee gradually got worse. My foot had been turning in when I walked for some time but whenever me or my mum mentioned this to the doctors and asked whether this could be the cause of my knee pain they said no tat wouldn't cause any problems and I just needed more exercise




So I kept cycling and knew the doctors didn't believe me and started to think that seen as every doctor I saw didn't believe me maybe it was all in my head. Thats when I made my big mistake. I started fighting the pain. If I intended on cycling 10 miles and myknee hurt quite alot after 5 miles I would cycle 20 miles to punish my knee and to punish myself for imagining this pain. You would think I'd have realised it wasn't all in my head when my knee was screaming at me but I'd had too many people not belive me by then

Over a couple of years I destroyed my knee. I kept seeing different doctors and kept being told theirs nothing wrong and that my foot turning in wouldn't cause any problems.

My knee got worse. It got to the point it would sublux or dislocate everytime I put weight on it. Finally last year I asked my rheumatologist about a hinged knee brace. She referred me to a nice guy who had never seen a knee quite like mine. After me telling him my knee dislocated sideways he told me that was impossible. So I showed him! He went a bit white and then was lost for words finall getting out 'umm...erm...uhh...its not meant to do that' yes that would be why I'm here wouldn't it because my knee is doing something it's not meant to. He then gave me my new knee, well ok it's not an actual knee it's a knee holder togetherer.It doesn't always work but it does a pretty good job. Felt really strange when I first walked with it on, I hadn't walked without my knee at least subluxing wth every step for years. Unfotunately it also removes skin and then my skin takes ages to heal so I can't wear it all the time.

Apparently my foot turning inwards has stretched a ligament on the outisde of my knee and that's why it's so much wobblier than my other knee.



I'm seriously starting to wonder if me and my mum should be doctors. We seem to know more than a lot that I've met! Although thankfully their are some good doctors out there. I have just registered with a new GP and she has actually heard of ehlers danlos syndrome!! And whats more she wasn't afraid to ask me questions about my condition, she was asking the difference between hypermobility type ehlers danlos syndrome and hypermobility syndrome. I've recently heard that a paper has been done about EDS3 and HMS and apparently the specialists have agreed they are the same thing but I haven't got my hands on the paper yet.