"I didn’t meet anyone with JIA until I was 16, and it opened my eyes when I did... because I realised I wasn’t alone and neither are you!"
I was diagnosed with JIA at 18 months old after I bumped my right knee and the swelling wouldn’t go down. My parents took me to the local hospital but the doctors couldn’t figure out what was wrong. After lots of tests, eventually I was referred to the rheumatology department at Alder Hey Children’s Hospital where I was diagnosed with juvenile idiopathic arthritis (JIA)!
In the early years of my life I was lucky, and I could manage my JIA with ibuprofen derivatives and in some cases nothing at all. When I reached the later years of primary school however this changed, and the swelling came back in my knee and oral steroid based medication gave me some not nice side effects. From that point I also had regular joint injections under anaesthesia for 7 years, mixing and matching my left ankle, left knee, left subtalar, right knee, right ankle, right subtalar, and left thumb.
In secondary school, I was prescribed an immunosuppressant medication called methotrexate which I took orally. It also comes in injection pens. For some people methotrexate works brilliantly, but unfortunately, I was not one of those people. I dreaded taking my tablets every week because of the side effects I experienced, but I had to try this first before I had access to newer medications. Eventually I was taken off methotrexate after it made me sick, I think I was about 15, and was instead put onto a biologic drug called adalimumab which has worked well for me since.
A few months before I moved onto adalimumab, I was in a year 11 PE lesson when I felt a pain in my left ankle which I classically ignored thinking I had just rolled it and it would be fine in a few days. Except I hadn’t rolled it and it was not fine in a few days….
The pain didn’t go away, and I resorted to walking on the outside of my foot to alleviate the pain slightly, eventually taking the crutches out of the shed that mum bought when she hurt herself abroad. I didn’t know at the time but those guys would be with me for a long while.
After many scans and hospital appointments the doctors discovered that I had no cartilage in my ankle joint and my bones had been grating together, not too helpful - thank you body.
So begins the ankle chapter of this story. I had an Ilizarov frame* for three months in the hope that separating my ankle joint would allow the cartilage to grow back. When it was removed, however, my physio was surprised when my ankle joint would not move despite all of his efforts (sorry Dave). We later found out that this was because my bone had grown across the joint. Again, not helpful - thank you body.
Exploratory surgery was performed in the hopes that the bone could be shaved away but unfortunately this didn’t work. The next option was to either have my joint fused or replaced. In the end I went with a full ankle replacement which was rather unusual at my age (18) but it was the right decision, and my surgeon kindly scheduled it 3 days after my leavers prom so I could go (just don’t tell him that I wore stilettos!)
I will not pretend that the whole saga was easy because that would be lying but I did get to do some amazing things through that time too. I went to hydrotherapy when I had my Ilizarov frame* on which was always a lot of fun, I also went on a geography fieldtrip! My crutches travelled with me to a lot of places over my 4 years with them. They went to the Lake District, Isle of Skye, China, Hong Kong, Madeira, Spain, prom and even nightclubbing in Liverpool which was entertaining. They even came with me to my first year of uni with my moon boot!
I sat my GCSEs and A-Levels amongst everything else that was going on and managed to get into my top choice university! And I am now on a new adventure doing a PhD, I am certain one of the many adventures I will have in my life.
JIA should not stop you from doing what you want to do. There are always modifications or adjustments you can make or ask others to make so you can give things a go, and it is always worth trying something at least once, just do it safely. If it doesn’t work, then you know and if it does then that’s great! But you won’t know until you try it! I have met some amazing people along the way whom I likely never would have crossed paths with had I not had JIA. In fact, I didn’t meet anyone with JIA until I was 16, and it opened my eyes when I did... because I realised I wasn’t alone and neither are you!
* An Ilizarov frame is a metal structure attached to the bones of the lower leg by metal rods or pins. It looks a little like scaffolding. It was used in Eilean's case to hold the joints of the ankle apart.
Eilean has also written some advice for us about heading to university if you have JIA, based on her experiences. You can read that here.
If you are concerned that a child or young person may have JIA and would like to know more, please visit www.thinkjia.org