Growing up with arthritis
Published on 11 January 2013
Arthritis is rarely associated with teenagers, yet it can be particularly severe in adolescence and lead to long-term joint damage. As Arthritis Research UK opens the first-ever centre dedicated to adolescent rheumatology, Phillipa Williams talks to young people who are living with the disease and the researchers who are trying to tackle it.
Emily Jones was 15 when she first started to feel pain and swelling in her knee, hands and feet. Three months later she was diagnosed with juvenile idiopathic arthritis (JIA) .
Over the past two years, Emily has lived with the pain and fatigue caused by arthritis, and the drugs that she has taken to try and manage the condition have caused her debilitating side effects such as sickness and headaches.
Says Emily: “I’ve found it really hard over the last two years, especially dealing with the side effects of the medication I was taking and joint pain while taking my GCSEs. I was too ill to sit most of my exams; I managed to pass my art exam but the pain I felt in my hands nearly stopped me from holding the paint brush.
“Arthritis is unpredictable, sudden flare ups and problems with my medication are really difficult to manage. Most of all, it’s hard to explain to my friends why I can’t do something, despite the fact that I look normal and could do it a week ago.”
Although arthritis is not commonly associated with teenagers, Emily’s story isn’t unusual. There are over 15,000 children and young people in the UK with JIA and many more have other rheumatic diseases such as juvenile systemic lupus erythematous (JSLE).
Having arthritis as a teenager is particularly challenging. It leads to pain, disability, fatigue and long-term joint damage. Side-effects of drug treatments can be debilitating. Young people often find that their symptoms become worse during adolescence.
Steroid use is common and often leads to changes in face and body shape and weight gain. Unsurprisingly, it impacts on all aspects of life, including education, social life and work. Research has shown that people who develop arthritis in childhood and adolescence often face educational difficulties that affect their employability in later life. There is a low awareness of teenagers being affected by the disease and a recent survey of adults showed that nearly two thirds did not know that teenagers could be affected by arthritis.
As Professor Lucy Wedderburn, director of the new Arthritis Research UK Centre for Adolescent Rheumatology, explains: “As well as dealing with the challenges of being a teenager, young people with arthritis have to come to terms with having a disease that they may have to live with long-term and affects every aspect of their life, including appearance, education and job prospects, and that can be very difficult.”
Research into how arthritis affects teenagers has, to date, been underfunded. Professor Wedderburn continues: “At the moment, rheumatology care and research are focused around adults and children, so teenagers often slip through the net.
“We do not know enough about how and why arthritis affects teenagers. We suspect that puberty has an adverse effect on the condition and that this could explain why it often becomes more severe in adolescents, but further research is needed to establish the link.”
In November, in collaboration with Great Ormond Street Hospital (GOSH), University College London (UCL) and University College Hospital London (UCLH), Arthritis Research UK launched the world’s first centre for adolescent rheumatology. Researchers at the £2.5million centre aim to vastly increase our knowledge of how rheumatic diseases such as JIA and JSLE affect adolescents.
Professor Wedderburn says: “This is the world’s first centre dedicated to understanding the very specific needs of young people who are growing up with arthritis. By focusing our attention on understanding why and how arthritis is different in adolescence, and what happens as young people enter adult life, we hope to dramatically improve treatment and care for people living with the disease.”
One of the main aims of the centre is to increase access to clinical trials for young people with arthritis. Because the current clinical trial agenda does not focus on young people this means that the treatments used to treat young people are based on research carried out on adults and children.
Many young people with arthritis will go into remission or they will find a treatment that can control their condition. However, in at least 30 per cent of cases, arthritis can remain active into adult life. Researchers hope to develop a tool to define the severity of the condition and help rheumatologists to prescribe the right treatments for patients.
Training and education is another key aspect of the centre’s work. As Dr Debajit Sen, clinical lead for adolescent rheumatology at UCLH, explains: “At the moment, young people with arthritis are often treated by paediatric or adult rheumatology specialists. The transition from paediatric to adult services can be difficult and often disjointed. The centre will develop a group of specialist adolescent rheumatologists who really understand the unique and distinct needs of young people who are growing up with arthritis.”
Although the centre is based in London, there are plans to create a network of researchers across the country working with teenagers with arthritis and related conditions.
Dr Sen concludes: “We hope that our work can help rheumatologists and healthcare professionals provide better care and support for young people with arthritis, stopping them from growing up in pain and with disability.”
Roberta Sheffield was diagnosed with JIA as a teenager. She is not letting it get in the way of her Paralympic dream.
Roberta, known to her friends as Bert, doesn’t let anything get in the way of her love of horse riding and her ambition to qualify for a place on the British equestrian team at the Rio Paralympics in 2016.
Diagnosed with JIA in her mid-teens, Bert has experienced ongoing pain, stiffness and swelling in most of her joints, with her hands, ankles, ribs, neck and shoulder particularly affected.
Having tried several different powerful types of medication, Bert now takes anti-TNF drugs, which enable her to cope with the stiffness she experiences in her joints. Most importantly, the medication means she can continue to ride her horse, Wonderboy. She first started riding when she was four years old and has recently won a place on the British Equestrian Federation’s Excel Talent Scheme.
Bert says: “I’ve ridden horses all my life. When my consultant advised I should stop on account of my arthritis diagnosis, it made me even more determined to carry on and enjoy life.
“Living with arthritis means I always have to think about how to adapt to the problems I’m faced with, such as the length of time it takes to look after my horses and the risk of breaking my bones, but I wouldn’t have it any other way. Even when my feet seized up during sixth form college, I persevered with my studies and gained a place at Aston University in Birmingham.
Her mother, Frances Sheffield, said: “I believe that Roberta is inspirational – she loves the fact that once on the horse she is liberated and not seen as disabled by those who do not know her.”