Jessica's story

"Reflex Sympathetic Dystrophy – what is that?" Most people say.  I wish I didn’t know what it was!  I am 12 years old.  I was born with club foot and have had several operations to correct it.  I was doing fine and could do practically everything any other child my age could but eighteen months ago my right lower leg started hurting, it was a funny colour and I had a continual burning sensation from inside my leg. 

After months of tests doctors diagnosed my condition as Reflex Sympathetic Dystrophy (RSD).  I started coming to see the pain management team at Sheffield Children’s Hospital. They are great.  There is no cure but with their help I am learning to live with it.  I have physiotherapy and come here on a regular basis to see my physiotherapist who really helps me.  She talks to me and listens to me too.

I have a lot of support from my family, friends and Sheffield Children’s Hospital.  Without this support I wouldn’t be able to cope.  I am in constant pain.  I have to use a wheelchair at the moment because the pain is too much to be able to walk very far. 

I have been coming to Sheffield Children’s Hospital since I was 3 years old for my club foot but I have only been coming to see the pain management team for about a year.  The first time I came I was very scared because I didn’t know what I had got wrong with me but they were all very nice and made me feel relaxed and have been helping me ever since. I am able to talk about the good and bad days.  I get fed up. I see my friends running around and wish I was still like them but I do have good days.

I still go for days out with my family - we have just been on holiday abroad and although I was limited with some things I had a really wonderful time. Thanks to a nomination from the pain management team and to the charity Dreamflight I have been one of the lucky ones chosen to go on a once in a lifetime trip to Florida, so I have something to look forward too. 

I have also been told about children with RSD and other chronic pain conditions that have come through it and are living normal lives again, so at least I can have the hope that it will be the same for me.

My family, friends and people at school all say they don’t know how I do it.  I always seem to be smiling but I have to live with RSD so I just try to get on with life as best as I can.