My story
Well where to start... here goes. I was born in 1989. We went on a family holiday. And when we was one holiday my mum noticed my tshirt wasn't sitting how it should be... so she had a bit more of a look to see what was going on.
Then when we returned from our holiday. My mum booked me into the doctors regarding this. Which they were baffled by it. And after appointment after appointment finally it was diagnosed.. yay finally got a answer. It took a while but we done it.
I was then getting older and more conscious of it. Which I would wear hoodies all the time. I would try my best to hide it. They I was told there was a meeting being held between professors and surgeon from all around the United Kingdom.
I was absolutely shocked and was questioning why was it taking all these people to have a meeting regarding me... didn't know this condition was very rare.
Then finally I was booked in for a operation in Southampton General whoop whoop. And it was as successful as it could have been due to me being the first for him to have operated on with this condition. It was a long 9 months. I had a spatial frame. It became part of my life. I must admit I did hide myself for a few weeks due to it. And was worried about going out.
Then was all good for a short while... then I've had issue with my hand I've had two operations on 2 different fingers. My strength in that side is nothing. Due to the arm op and now the fingers operated on. But again due to the arm I have scoliosis of the spine. Its just one thing after another. I have currently got enchrondoma in my thumb at this present time. But we are keeping a eye on it. Can anybody tell me any good remedies for pain relief.. Feel free to ask me anything. Or even for a chat would be cool to know if there is anyone else out there...
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