Hi!

My name is Sophia Blackburn and I’m aged 13 and have a syndrome in my arm which unfortunately over the past years has stopped me participating with various activities and events I have enjoyed doing. I am a competitive swimmer and I am doing the Triathlon at Hever Castle. It includes a 1 mile swim, 40 km bike ride and a 10km run, and this is my story so far...

Two years ago I was in a wood technology lesson at school, in my first year, and I was chiseling away at some wood when I accidentally slipped and instead of chiseling the wood I chiseled through my finger. We got to the hospital and just by luck I had missed my nerve. However they did have to put three stitches into my finger and have it in the sling for the rest of the day. Unfortunately though it was coming up to February 3 days before I was about to go skiing for the first time. So, I had an injured arm, with stitches and a bandage around it, which I wasn't allowed to get wet!

Thankfully I came back from skiing and my finger was all fine but I was getting funny shooting pains going up my arm, so we went back to the hospital and they said that I had sprained it and I should keep it in a splint for the next two weeks and slowly start using it again. So I did just that but my arm still didn't heal and in fact it got worse and the pain was antagonising so I was referred to the children’s outlet unit at the hospital.

It was the day of my appointment for finally finding out what was wrong with my arm. This time round they told me I had a syndrome called Complex Regional Pain Syndrome Type 1, which I immediately said, what is that? Well they explained this syndrome and most of the symptoms did match that of my arms (it can happen in any part of the body); swelling up, discolouring, shooting pains, sweating, rapid hair and nail growth, and being very painful and causes chronic pain.

My mum, dad and myself all thought brilliant they know what it is and can now get sorted efficiently, but that was not the case as a matter of fact it was the complete opposite! I'm a very sporty person, and take pride In my swimming and dancing, but all had to change as I had to give it all up as setting off the cycle of my arm could be very bad. But luckily for me I hadn't got it as bad as some people. Some people who have got this are unable to walk, or move the area where it has affected them. So for me having to give up all my activities for a while did seem awful, however it wasn't that bad compared to some others. So for that I was thankful.

Unfortunately for people who suffer with this syndrome, like myself, may not get much help as much is unknown about and very complicated, as you are probably thinking! And it is complicated for me because it is to do with retraining the mind to connect my arm with my Brain/body.

A year and a half later, with some minor hiccups with me pushing myself too much, my arm is not half as bad as it used to be. However it is still painful and I am still not competing in my swimming and or doing the same amount of sporting activities. I still do think of the people that have got this worse than me and are affected by it so badly that they cannot walk! Luckily for me I was diagnosed with it and referred to the physiotherapy/hand therapy and the nurse there had also spent some training at the Royal National Hospital for Rheumatic Diseases Bath, who have a specialist unit for people who suffer with Complex Regional Pain Syndrome (CRPS) and she understood everything about it and had treated people with the condition.

So now I am doing this triathlon on the 30 th of September to raise money for Bath Hospital who have a specialised unit up there and the money I raise can go towards helping people that have got it much worse than myself! We can actually have a say as to how the money is spent and to make sure the donations go towards CRPS.

Your support is so important to me because without support of friends and family my arm could be much much worse and with the help of you, the money that is raised can go to helping someone walk again!