I got juvenile arthritis at fourteen

Juvenile arthritis is a rare condition that affects 20,000 young people a year in the UK. 17 year-old Tom tells The Mix about dealing with the disease.

True Stories

"I knew something was seriously wrong."

I first realised when something was wrong when I was forced to crawl back from lessons as I had no ability to properly walk. I had just finished lessons and was a ten minute walk back home. Up to this point, I felt fairly normal. Suddenly I felt pain in my feet and ankles. I knew something was wrong.

A few days later, I couldn’t straighten my middle finger without a great deal of pain. Then there were the aching elbows and joints in the night which caused me to wake up. It pretty much immobilised me and my ability to move my arms. I had no idea to what was happening to me.

Something was clearly wrong

There clearly was something wrong. I went to specialists in Windsor. They examined me and took blood tests and couldn’t find a problem with me. In the end they told me to basically man up and get on with my life and stop complaining. They could not see my disease through the blood test even though I was in agony. After trying to ignore it for a few weeks the pain still was too much to handle and it was clear that this was now much more serious. Whatever it was was preventing me from walking and doing everyday things.

This was the moment that my family and I decided to take action and organised to visit one of the top consultants in the country in Great Ormond Street Hospital. After just a five minute inspection, I was diagnosed with having juvenile arthritis.

Learning how to control the condition

They told me about the various medicines and procedures that we could go about in order to make my condition as endurable as possible. After being diagnosed I accepted it quite quickly. I never really asked ‘why me?’ or anything like that which is quite surprising looking back on it. Right from diagnosis all I really wanted was to be able to move properly again, not question why I couldn’t.

Medicine was not fun. I had to endure pills for a while that made me throw up. This was a low point because I was not prepared to take pills and equally I was not even slightly open to the idea of the other option – having injections. I hate injections, but in the end I had to have them.

Other than the inconvenience of having to be injected on weekly, it wasn’t so bad. I was starting to accept that I wasn’t getting better and just had no choice but to take the medicine.

My new medicine now is much better. It is an improved version of the previous and is much less painful to take. It does mean that I have to have two injections a week as opposed to just the one, which is a bit of a pain mentally and physically but I don’t feel sick after it.

I have to inject myself twice a week now into my thigh. It’s not fun but I’ve picked up a method where I ice my legs before the injection to numb the pain. At my last few check-ups I was told that the medicine was working and that, despite having seventeen joints affected, provided I keep taking the medicine I shouldn’t feel any symptoms. I was told that the medicine was 95% effective and although there was no cure it was as good as it got.

The future

There is no cure for arthritis although the injections seem to be working fine, the doctors didn’t at the time and still don’t know why people can get this disease. They know it’s caused by my immune system attacking my cartilage in my joints, and that’s about it.

My friends were shocked by it at first but it has become one of my traits when taking the piss out of each other and they do not use it in a bad way in my eyes. The future is looking reasonably good because it is unlikely that there will be faults with the medicine which is great. I am not completely symptom free at the moment and I still get a few aches and pains but they are not too distressing. It doesn’t prevent me from playing other activities such as squash and football and tennis which I enjoy.

If you’re worried about the possibility of this happening to you, my advice is don’t worry. It is extremely rare to have juvenile arthritis and only around 20,000 people below 18 have it in the UK. But if like me you are very unlucky and get diagnosed with it, I have made a website as part of a school project that you can go to for advice about how to cope.

Photo of sad boy by Shutterstock and posed by model