Still's Disease, JRA, JIA or whatever they want to call it today...
Posted Feb 19 2011 12:00am
I went looking for some information about the condition I was diagnosed with over two decades ago. Given that I couldn't find too many personal stories online, I went looking for information in relation to the actual condition to see how common it actually was. Since I'm not enrolled at uni this semester, my access to journal articles has disappeared and I am reliant on information freely available online, so it may not be entirely timely or accurate. The name has changed according to Arthritis Foundation in Queensland to JIA (Juvenile Idiopathic Arthritis), basically meaning arthritis of unknown origin. What it is, is still the same and is an umbrella for a number of different types of juvenile arthritis. Apparently some of what I have are quite common (JIA affects 1:1000 children according to the Arthritis Foundation ), other parts not so much.
According to Arthritis.Org , Systemic Onset JA (otherwise known as Still's Disease) is the least common form of juvenile arthritis. The Royal Childrens Hospital's Rheumatology department bundles systemic onset with other types that affect less than 10% of cases. In half the cases diagnosed, symptoms disappear between 1 and 3 years leaving no lasting joint damage. What isn't really clear is what 'lasting joint damage' you are left with when the year is over and the fevers and the rash disappear and you are in the other 50%. For me, most of the damage that was done happened in that first year or so has been the cause of most of the ongoing pain. On both sides, the hips are bone on bone with no joint spacing. I'm not sure when the protusio occurred - it shows up in 2002 x-rays. I don't have any before that and I don't remember any further back than that.
The first symptom was intermittent pain in my hips that caused a limp. The limp changed sides over the first few days and looked a lot like a twelve year old trying to get out of something that she didn't want to do or maybe even 'growing pains'. Unfortunately that isn't what it was and the fevers, nausea started and more joints were becoming painful, warm and swollen. I was hospitalised within a fortnight of the first symptoms and remained in hospital for six weeks. During that time I met one other kid with arthritis. He was a lot younger than me and had it since he was two or three and I didn't really talk to him that much. Mostly our mum's chatted and even that was only briefly when they saw each other when we had appointments with physios, doctors, occupational therapists that overlapped. That was it. I felt like I was on my own with this. I will share more about the next twelve months and around the time around the diagnosis. It won't probably be until after the surgery.
After twelve months, I improved dramatically and flare-ups were reasonably rare. I was no longer reliant on a wheelchair and could walk reasonable distances. I was never going to be a runner but there was little I didn't do that I wanted to when I left high school and for the next few years. At some level, I had convinced myself that I didn't want to do the things that I couldn't. Things started to turn again and the list of things that I didn't want to do increased. When I was in group situations, it was easier to say that I was too lazy to participate. It seems to be more socially acceptable to be lazy, than physically incapable of doing something. Less questions are asked and no pity offered, so lazy it was.
The pain only occurs when I do too much. So I became reasonably good at judging what was too much and stopping just shy of that. I got it wrong sometimes. I rested, the next day I took it a bit easier. The list with what I couldn't do was getting longer and recovery time from overdoing it is becoming longer and longer. The efforts that I have made to try to maintain the range of movement in my hips and maintain my quality of life could probably work for a little while longer, though what I want from my life has changed somewhat too. If you had asked me a few years ago, I would have told you that there would be no way that I would be looking at surgical options now. That was always something for down the track.