Emily Jones was 15 years old and preparing to sit her GCSEs when her plans were halted by the unbearable pain she was experiencing in her hands and knees.
For months, Emily, from Cardiff, had put up with painful swelling in her joints before she was finally diagnosed with juvenile idiopathic arthritis (JIA) just a week before her exams started.
I really didn’t know!
Normally thought of as an affliction of older persons, arthritis affects around 000 children, 15, and young people in the UK.
That should get better. As a cancer patient, you hear that a lot. Weakness from the radiation? That should get better when we’re done with the treatments. Pain? Same answer. Neuropathy? That constant tingling in your legs and feet? That should get better over time. Unless, of course, it doesn’t. When it comes to side effects, sometimes all you can do is wait and see and hope. I’ve tried to come to grips with the fact that some of this is …
Emily says it was a relief to ask a name to her pain, but at that point in her life it was also devastating to learn she had a chronic condition.
She was unable to sit most of her exams and the side-impact of the drugs she was given left her feeling ill and exhausted.
Now 28 and a marketing and business development officer, she has lived with stiff and swollen joints for many years. But she said it was particularly difficult during her teen years.
Michelle is due to have her right hip replaced next year-her third hip replacement since the minimum age of 17.
The first was during her university degree. She had to get to walk again, how to go up and down stairs and her degree took longer to finish as a result, but she has no regrets.
Researchers from the Arthritis Research UK Centre for Adolescent Rheumatology, set up in collaboration with University College London, Great Ormond Street Hospital (GOSH), and University College Hospital, want to see why young people like Emily and Michelle are affected by rheumatic diseases and the way they can improve their treatment.
Prof Lucy Wedderburn, head of the new centre and a consultant at GOSH, says this will involve large-scale studies and clinical trials specifically involving young people with arthritis-and not adults, who’ve been the subject of most research in the past.
It could be that teenagers experience changes in their immune systems during puberty which triggers auto-immune diseases like arthritis.
Researchers also to try to understand why some people are more likely than others to some types of arthritis during adolescence and how these develop in adult life.
Finding the best drug to treat each young person with is another huge challenge, says Prof Wedderburn.
The first drug Emily tried gave her awful headaches and stomach aches and left her feeling extremely tired. Soon after, she changed to an injection form of the drug but the symptoms didn’t improve.
This frustrating trial and error process with drug treatments is what researchers are desperate to eradicate, in conjunction with the debilitating side effects of many drugs.
Michelle has tried various medications over the years which have resulted in hair loss, allergic reactions and sickness among other side effects.
She has also spent years on steroids which have stunted her growth and could create problems with osteoporosis later in life.
She would love to come off the steroids. However, she knows that her body wouldn’t deal with a reduced dose.
Emily is now 17 and excited about moving far from home to go to university next year after managing to finally sit her exams with the aid of a scribe.
Despite the difficulties they face every day battling with their bodies, both Michelle and Emily feel the disease has made them stronger and more focused as people.
As Michelle says,’ Arthritis helped me become the person I am today-open-minded and determined. I’ve had challenges to face, but had to do was get on with it. ‘