Simon Stones, aged 21, has never known life without juvenile idiopathic arthritis (JIA). He was diagnosed with the autoimmune condition at the age of three.
He had to have a lot of time off school and spend many hours in hospital. But now, Simon is dedicating his future to help other people who have the condition.
A difficult start
“JIA is an invisible condition,” Simon said. “I look like any other healthy young adult; however, like many other young people with long-term conditions, I have learnt to disguise the condition well and get on with my life.
“Growing up, the pain was really bad. On top of the swollen and inflamed joints, I couldn't take part in usual day-to-day activities and often had to use a wheelchair to do simple things such as going shopping.
"For as long as I can remember, pain has been a daily part of my life, and something you get quite used to.”
As well as JIA, Simon also has Crohn’s disease, fibromyalgia and joint hypermobility (where the joints over-extend). Simon needed surgery aged 11 to secure a dislocated hip which was caused in part by hypermobility, which affects many people with JIA. And taking methotrexate gave him sickness every weekend for five years until he was moved onto a biological therapy called etanercept.
But despite these difficult experiences, Simon didn’t let the disease impact on his life chances. Through hard work and determination, he gained 16 A*s and As at GCSE, and his education has continued to be a success.
"The experience of living with JIA has given me a curiosity and desire to understand the wonderful biology of humans."
After gaining two As and a B in his A levels, Simon opted to study biomedical sciences at The University of Manchester, where he’s studying the disease he has lived with since he was three.
“The experience of living with JIA has sparked a curiosity and desire to understand the wonderful biology of humans, and to improve the experience that children, young people and adults have once they've been diagnosed with a long-term condition such as arthritis,” Simon said.
“I often dreamed of making a difference but never thought that I would be actively working with musculoskeletal researchers to change tomorrow’s healthcare so early into my career.
"It really is quite exciting."
Helping to influence research areas
Simon is now embarking on a career researching into the condition which has affected him from a very early age.
As well as working on his degree and applying for a postgraduate doctorate course, Simon has been working hard on one of Arthritis Research UK’s clinical studies groups (CSGs).
CSGs are instrumental in shaping the questions and areas of focus of research to help increase the understanding around the disease, as well as encouraging more young people to take part in research.
This experience has helped Simon develop an even greater understanding of research in biomedical science.
He said: “The work I've been doing with the CSG and other patient groups has encouraged me to pursue a career in research.
"I'm currently building up my portfolio of evidence and will be applying for PhDs.”
Simon is currently spending a year in the world of industry and his placement is with a pharmaceutical consultancy company in Cheshire.
Simon is also working with a team of researchers and healthcare professionals on a project to look at the potential for an app which helps young people with arthritis.
Among other features, the app will:
- help people organise medication regimes
- remember appointments
- provide physiotherapy guides.
Simon said: “We want to make sure that the app is developed to the highest of standards, ensuring that we generate the required evidence needed to receive funding and approval into the NHS.”
To feed into the project, Simon has launched a survey with a colleague from Arthritis Care Northern Ireland, Catherine Wright. The survey is identifying the top concerns of young people with arthritis.
Simon has been successful in having oral presentations accepted for both the survey and mobile app at the European League Against Rheumatism (EULAR) annual congress, a large european conference attended by doctors and researchers from across Europe.
Everything has led to this point for a reason
Simon says that without what has been at times a very gruelling experience with arthritis, he might not be at this exciting point in his career path.
He said: “My placement year is almost over, and I am already thinking of my final degree year and PhD applications. Time certainly seems to go faster as you get older. I absolutely love the work that I’ve been doing recently. It has been a steep learning curve, but I wouldn’t want it any other way."There's a light at the end of the tunnel."
“Everything has led to this point for a reason. Going back to being an insecure and uncertain 10 year old, I could never have dreamed where my experience was going to lead me.
“Adolescence is challenging at the best of times. But the added impact of a long-term condition like JIA really takes its toll on young people and their families.
"Over the past couple of years, I've presented talks to young children and their parents, offering them support and showing that there's a light at the end of the tunnel. Let us keep sharing the message and raising awareness that children do have arthritis, but it doesn’t mean that their lives shouldn’t be lived to the full."
Coping with fatigue
Simon has also experienced a lot of fatigue. He said: “It's much more than just feeling tired.
“Know what you can and cannot do, and be open with your family, friends and doctors. Tell people how you are feeling – never struggle on your own.”
Talking can help
Some young people choose to keep details of their condition to themselves, which is entirely up to them. But for Simon, talking has helped.
Be open with your family, friends and doctors.
“I've always found that it’s better to speak about my condition," he said. "People will never be able to offer support or understand if you don’t tell them how you feel.
"Friends, family and colleagues are always understanding, especially if they know your capabilities and limitations."
A focused attitude
Simon has always had a focused attitude and approach to life that has served him well.
He said: “A lot of young people with long-term health conditions have to grow up quickly. I certainly had to grow up a lot quicker than other young people my age.
"I thought having to put in lots of work at home was just part of having these conditions, but I was driven by the goal of achieving my dreams, despite the many hurdles and obstacles in my way.”