From a point of arthritis in children and young people it is a painful swelling of a joint. And that is due to inflammation of the lining of the joint and then causing increased fluid within the joint and that’s what causes swelling and it’s painful and slightly warm and albeit not very red and if it was very red you’d worry about it being infected. But that’s really the simple definition of what arthritis is. Obviously there are then different types of arthritis and I think the most important issue with young people with arthritis is that it is a different arthritis to what adults get. And the main form of inflammatory arthritis or arthritis due to inflammation in young people under the age of sixteen is called juvenile idiopathic arthritis, of which there are seven types. But that is the main umbrella term for arthritis affecting young people. Then once you’re over sixteen, then yes you can get the more adult rheumatoid arthritis – ankylosing spondylitis. They are different diseases to juvenile idiopathic arthritis which is the commonest inflammatory arthritis in young people.

the definition of arthritis in children has been an ongoing issue for many years and they do like to keep changing it. The very old definition was called Still’s disease defined by Frederick Stills way, way back and then came juvenile chronic arthritis and the most recent internationally approved term is juvenile idiopathic arthritis. Idiopathic being a term that only doctors use and means we don’t know what causes it. And hopefully one day with research and everything we will be able to drop that term because we will know what causes it. But in an attempt to help doctors and researchers to work out the cause we need a all the professionals to agree on a term and so that we’re all talking about the same thing. Rheumatoid arthritis is the adult disease; you cannot get rheumatoid arthritis under the age of sixteen. It is an adult disease that primarily affects the sort of forty year old plus although younger, younger adults can get rheumatoid arthritis. But JIA is the main internationally approved term. There is a confusion in that the Americans do call, still call it sometimes juvenile rheumatoid arthritis but because of this confusion with the adult internationally there’s a move to JIA – juvenile idiopathic arthritis.

I think it’s very confusing because I didn’t really know what I had. I’ve always, it’s always been referred to as rheumatoid arthritis, that’s what I have, that’s what I’m treated for, in all my hospital notes that’s what I’m told. If anyone asks me if I have any medical problems I say I’ve got rheumatoid arthritis. But in my initial clinic letter on my diagnosis it is written as polyarticular rheumatoid factor positive JIA and since doing a research project at Uni actually I’ve found that the official terminology is any inflammatory arthritis diagnosed before the age of sixteen that lasts more than six weeks is officially juvenile idiopathic arthritis so I think there is a lot of confusion and actually I think it probably be more useful if everything’s stuck to. But then I don’t think you’d find an adult who wants to be, their disease to be referred to as juvenile because it makes it sound like something that just children get.

To start with I wasn’t really sure what was going on. I remember that it was in the summer and I was quite ill. Like I don’t really usually get ill often but I was like dizzy and a bit nauseous sometimes, and I had to have a few days off school. And then that was right before the end of term. And at the end of term my school does an activities week where we get to choose activities and then go and have fun for a week. And I’d chosen to go camping, and so I thought I’ll be okay to go camping. I was improving, I was not perfect but I was a lot better than I was. So I went to this activities week and well everything went downhill a bit. My knees swelled up massively, I mean they were huge, they were like balloons, I could barely walk so it was not fun at all. I didn’t really get to do much, I had to drop out of a lot of the activities. I still enjoyed being with my friends but if you were away from home, without your parents, with people that you don’t know that well it’s kind of a scary thing to have to do, especially when you’re 14.

So my name is Kerrie. I’m twenty five years old. I was diagnosed with rheumatoid arthritis just over two years ago now, when I was twenty two. I suppose my symptoms all kind of came about very suddenly overnight almost. I suffered with what I thought was a flu-type virus for a little while. Made several visits to the doctors, had lots of different tests, that kind of thing.

And nothing ever really came back. It was just one of those things that, oh, been told to go away. It was a virus, you know, that I would get better eventually but I just tended to struggle on really. I was finding it difficult at work, at the time.

The initial symptoms really for me were swollen fingers. That was the first thing that I kind of noticed as such. It was almost as if I’d kind of broken my fingers but couldn’t remember doing it and again it kind of happened over night. I woke up one morning with swollen fingers, painful to move and this general flu like feeling, again which I thought was just a cold really. And then it slowly progressed into my wrists, the pain, again this stiffness, feeling of kind of not really being able to move in the morning and, you know, painkillers weren’t really helping. It was it was a weird sort of a pain to describe.

And things progressed into my joints. I started feeling very tired all the time. I was getting pain when I was walking and the soles of my feet, my hands were very stiff, wrists and also, like I say this general sort of flu like feeling. It didn’t go away.