Growing up with arthritis: Simon’s journey to finding a career

Growing up with arthritis: Simon’s journey to finding a career

My name is Simon. I’m 21, I’m at university and I have got juvenile idiopathic arthritis. My Mum had arthritis, but a different type so it was osteoarthritis I was three at the time and she noticed that one toe and one finger were starting to look a little bit miss-formed so she took me to her rheumatologist who was an adult doctor. He wasn’t really sure and I went to the children’s hospital and they did the tests and the X-rays and all the photographing of the joints and by that time some of the other joints had started to look a little different as well and they said ‘he has got JIA’. It was a horrible couple of years as a young person at seven or eight feeling like nobody was listening to me saying ‘I’m being sick all the time, this shouldn’t be happening’. I never went out with friends because I was just too unwell to do so and then I had the inflammation on top which wasn’t getting under control. I spent a lot of time at home I never actually met anybody with arthritis until I was a late teenager So that is a long time, other than at clinics when you see other people sat with Mums and Dads. I think having a long term condition, not just arthritis, but any long term condition makes you grow up a lot quicker than you should have to. So as a young person at the age of seven or eight, I was having to self inject. I have always been interested in medicine and biology and I always wanted to know about my condition – all the blood tests, everything. I think that sort of instilled me to do biomedical sciences at uni. I was asked by my consultant, who was a paediatric at the time He said ‘the clinical studies group, that Arthritis Research UK run have got a vacancy for a consumer representative and they had three parents at the time, but they have never had a young person, would I consider applying?’ One of the key projects I am working on at the moment is to develop an app for children and young people and we are using JIA as our starting condition and we want to roll it out to other conditions in the rheumatology spectrum. Without arthritis, I don’t think I would have been as determined been as passionate to do a degree which is in biomedical sciences inspired by having the condition and always wanting to know the science behind it , and without having the experience of living with the condition I don’t think I would be where I am today. It has inspired me to take a career in research and to really make a difference to help other young people. Having arthritis, really isn’t the end. It’s a chance for you to prove to people that you can beat your condition and you can lead as normal a life as anybody else. Why shouldn’t I just lead a normal life? Or, as my normal life to me?

1 comment on “Growing up with arthritis: Simon’s journey to finding a career

  1. strcd Post author

    Thank you for posting this. I have just been diagnosed with OA at age 20 so this has been very comforting.


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