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Charlotte's Story

Charlotte Parsley is twenty four years old and lives in Hitchin, Hertfordshire.

I first got ill in January in 1996 when I was ten years old. I kept waking up with stiff hands and wrists and eventually went to casualty to try and find out what was wrong.

The doctor gave me some anti-inflammatory drugs but the next day when I woke up I couldn't move.

All of my limbs were stiff and painful; I had a fever and felt absolutely exhausted. This was very scary as my mum thought I might have meningitis. The doctor came immediately and took some blood tests. He confirmed it wasn't meningitis but couldn't diagnose anything else either. The next day I felt absolutely fine but my hands and wrists were still sore.

Over the next six months I was diagnosed with Juvenile Chronic Arthritis. I was really shocked and upset when I was first told this as I thought that only older people got arthritis and because I was a very sporty person I was worried that I wouldn't be able to do sport anymore. Between January and June I had regular physiotherapy and had to sleep in splints.

When summer came I became very tired. I used to come home from school and go straight to bed. I also developed a kind of blotchy rash on my cheeks and the bridge of my nose. As the weather got hotter, my condition got worse. I had no energy and was tired all the time so my doctor put me on steroids and sent me to see a rheumatologist.

As soon as the rheumatologist saw me he said that I had a condition called Systemic Lupus Erythematosus. I was so shocked that I had been diagnosed with the wrong thing. Of course I was absolutely petrified as well as I had no idea what Lupus was whereas everyone knew what arthritis was. Unfortunately by this time I had severe kidney damage and was sent to Great Ormond Street.

At first when my Lupus got diagnosed I got really depressed, having to take tablets, keep out of the sun and basically being different from other people my age. I got really frustrated and angry too, wanting to know why Lupus had chosen me - why not somebody else. I know it sounds really stupid and remember I was only 10, but even though I'm not in the least bit religious I felt as though I had done something wrong and that God was punishing me for it.

It didn't help when I went to a coffee meeting for our local Lupus UK group with my mum and every single member was at least sixty and talking about knitting patterns. This made me think that people my age didn't get this disease and that I was some sort of freak. I also believed people would treat me differently because of the Lupus, hang on don't get the tissues out yet!

After a while I stopped feeling sorry for myself and started to get on with my life. I stated to learn a lot more about the illness itself and learnt how to deal with it in the best possible way. Now I know a lot more about Lupus and feel very differently about it. As to taking the tablets and putting on sun cream everyday, it becomes part of your life and although it can be inconvenient and a nuisance sometimes, you get used to it. I have also learnt to listen to my body more, for example if I'm feeling tired I know to go to bed early or not to do so much the next day.

After finishing my A Levels I went to Lancaster University but had to give up after a year after going into kidney failure. I had to go on dialysis as my mum and dad were being worked up to be live donors. In the end my mum turned out to be a perfect match and the kidney transplant went amazingly well with no rejection. I have felt so well since the transplant and my mum is also doing brilliantly with her 1 kidney.
Since having my transplant I have finished my degree and now work in London. I am planning to start a course next year to become a teacher and can't wait!

I was very wrong about people treating me differently because of my illness- most people don't even know there is anything wrong with me. My friends and family are really understanding about my Lupus and they are always there to help me if I need it. I lead a very normal life most of the time, going to work, playing sport and going out with friends.

Even when things are bad and it is important to stay positive and just remember there is always someone out there worse off than you.

Updated February 2010