When young people develop any symptoms, I think of joint painthe first thing I think is to remember that arthritis is only one of many causes of joint pain in young people and not to imagine that if you’ve got a sore knee it necessarily is arthritis but it is important if it continues on, isn’t related to any injury etc to get it checked out by a doctor. Now some young people will not want to complain of pain or symptoms and just put up with it. But if it is continuing it is wise to see a doctor and go to the GP and ask them to check them over to see if there is any concern. Arthritis is diagnosed by an examination, there are no blood tests that diagnose arthritis. It helps decide which type of arthritis but arthritis is diagnosed by physical examination and taking the story from the young person. Now that takes skill and we’re hopefully improving awareness amongst doctors and health professionals about how to examine young people’s joints and take good histories so that they can decide whether somebody’s got arthritis or not, but it is important that they seek advice regarding it.

I think the, one of the problems both from a patient point of view and from a professional point of view or a rheumatologist point of view is the lack of awareness that arthritis can affect young people and that they are not believed and they’re told they’re growing pains and there’s a delay in the diagnosis because of the awareness that young people don’t get arthritis and the sites like this will hopefully raise awareness that young people do get arthritis and it is very important for them to be treated early. One of the big differences with juvenile arthritis and adult arthritis is juvenile arthritis is affecting a growing skeleton and the effects of arthritis are different because it is affect.it can affect the growth of that joint and then once that joint is, you know damaged or whatever by the arthritis then the growth is also affected and that has implications then long term. So we want to see children and young people as early as possible in order to prevent any of their growth being affected as well as any of the bones being affected. And that is different to an adult arthritis because the joints are fully grown and growth isn’t affected.

When she was 18 months old she started coming downstairs walking and all that and we noticed that she started hanging onto the banisters to come down the stairs and so it was something to do with balance. We thought it was an ear infection because she had a bit of a sniff and cold and a bit of a sort of a virus at the time. And so it didn’t clear up and she still hung onto the banisters so we actually went down to the doctor and no disrespect to our GP, but luckily he was on holiday and we had a stand-in locum who was paediatric trained.

And after the first consultation he referred her to a super-fast clinic, direct to the local area consultant rheumatology and the next day we saw the consultant NHS. And that consultant in 1993 is still the same consultant seeing Elizabeth what 17 years later with the same physiotherapist and the same rheumatology team.

So from the outset that was our experience of the NHS. So we’ll go on from there.

That’s quite remarkable then so was the diagnosis quite quick?

The diagnosis was after a few blood tests and other things I can’t remember, was literally you know within a week I would think, or on that day it could be because we were obviously shell shocked

Karen’ I think it was back in February. Charlotte’s always complained of sore knees and we took her to the doctors when she was younger, seven but they always said they were growing pains, nothing was ever, never looked into or anything. And now, when we look back, we think maybe that was the beginning of it but it really became an issue in February. Charlotte used to go to boarding school. She came home ill and she had about a week off and then she went back because she was perfectly healthy before that week and she started complaining of joints hurting, mostly her thumbs started to ache.

But we just put that down, she was doing GCSEs at the time, a lot of work and she used to box and we just put it down to all things that connected with that. Then wrists were hurting and we just, once again said it was all the jolting from the boxing and her feet were sore and we put that down to she needed new shoes. Never once connected that she had an illness or anything.

Anyway, it got to the point where her thumbs were so sore we ended up taking her to the doctors and he, once again, said it was loose ligaments and it was normal in a child of her age. Again, about I think about two weeks later, she still she couldn’t write.

But like I say, the symptoms were just normal. Nothing out of the, that you’d put down to arthritis. Never once clicked.

Robert’ However, when she was boxing, she was complaining of how much it hurt her wrists and ankles and stuff like that and getting injured but the injuries weren’t sort of consistent with the boxing making it worse more but she used to just carry on with the boxing and just associated with the normal pain from boxing but it wasn’t.

Karen’ Yeah.

Robert’ Her and her energies weren’t sort of getting any better. You know.

Karen’ But she didn’t complain too much because she wanted to, she loved it, enjoyed her boxing and things so Charlotte never, didn’t tell us the full extent of what pain she was in because she thought we’d stop her from boxing. She wanted to carry on as normal as she could. So, yeah.

Up to the point of when I was eighteen, nineteen, I was a completely normal teenager. I was exercising. I used to run quite a lot and it wasn’t until then that I started to notice some symptoms of something I didn’t realise or didn’t know what it was, yeah. It started off with some neck pain, actually, and it started to get really stiff but well, I just thought it was growing pains or whatever, so I just ignored it. And then a couple of months later from that, it started to move so including my neck it also moved to the bottom of the spine. That would get quite stiff and over time, hands and feet and it was at that point I realised that was not really normal for growing pains. So I went to the doctor and they did the initial test for ankylosing spondylitis because automatically it triggered something and they did blood tests to check for inflammation and an x-ray to see if there was any fusion that’s characterised with ankylosing spondylitis.

And they were both they were both negative for any signs so they thought, okay, maybe it is just growing pains. So they sent me away and just to see how it goes and if it got any worse, come back and it didn’t get any better. In fact, it got quite worse, not particularly that it moved anywhere but it just intensified and to the point where it was actually starting to interfere. I couldn’t cope normally. I couldn’t function normally and so I went back and because they’d already done the test for AS they weren’t as keen to go down that route. So they started to go down different routes, maybe it was nerve pain, maybe it was something else that they hadn’t realised yet. So, they were they sent me to a consultant at a hospital and they did various MRI scans to see if I’d maybe slipped a disc in my back that could have triggered pain to other parts of the body.