Researchers at the £2.5 million Centre, which is a collaboration between UCL, University College Hospital and Great Ormond Street Hospital, aim to understand why rheumatic diseases such as juvenile idiopathic arthritis (JIA) or juvenile systemic lupus erythematosus (JSLE) can be more severe in teenagers and why specific types of arthritis are more likely to occur in this age group. It is hoped that the research carried out at the Arthritis Research UK Centre for Adolescent Rheumatology will lead to better treatments for teenagers and young people with the condition.
There are approximately 15,000 children and young people in the UK living with arthritis. It causes disability, pain, fatigue and irreversible joint damage.
Having arthritis as a teenager makes the physical, psychological and sexual changes teenagers go through more difficult. Side effects of drug treatments can be debilitating and can increase the risk of infections. Steroid use is common and often leads to a change in face and body shape and weight gain.
The condition 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.
Professor David Isenberg, Professor of Rheumatology at University College London, said, “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 for the rest of their lives and affects every aspect of their life including appearance, education and job prospects.”
Professor Alan Silman, medical director of Arthritis Research UK, said, “Having arthritis at any time in your life is difficult but having arthritis as a teenager is particularly challenging.”
“At the moment, we know too little about this disease. Research into how arthritis affects teenagers has been underfunded and we need to do more to develop life-changing treatments. The Arthritis Research UK Centre for Adolescent Rheumatology will help to give hope to young people currently living with arthritis, helping them to grow up free from pain and disability.”
Professor Lucy Wedderburn, Head of Rheumatology at the UCL Institute of Child Health and a Consultant at Great Ormond Street Hospital, said, “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 they enter adult life, we hope to dramatically improve treatment and care for young people living with this painful disease.”
The Centre aims to:
Improve our understanding of the long-term effects of arthritis in adolescents and the drugs used to treat it. The inclusion of teenagers in these studies will enable monitoring of young patients taking specific drugs and their disease progression.
Improve the number of young people included in clinical trials and increase access to therapeutic drugs. To date, teenagers with arthritis have had limited access to clinical trials, therefore the treatments used to treat young people with arthritis have been based on research carried out on adults and children.
Improve care by creating a group of world class experts in adolescent rheumatology.
Establish a UK-wide, national network of researchers working with teenagers with arthritis and related conditions to extend the benefits of the centre across the UK and internationally.
The Centre officially began work on the 1st October 2012 and research is due to start in early 2013.
The Centre will have twelve staff from across the three participating institutions.
The work of the Centre will help young people like Emily, aged 17, from Cardiff. Emily was 15 when she first started to feel pain and swelling in her knee, hands and feet. Three months later she was diagnosed with 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.
Emily said, “I’ve found it really hard over the last two years, especially dealing with medication side effects and joint pain whilst 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.”
Notes to Editors
Great Ormond Street Hospital for Children NHS Foundation Trust is the country’s leading centre for treating sick children, with the widest range of specialists under one roof.
With the UCL Institute of Child Health, we are the largest centre for paediatric research outside the US and play a key role in training children’s health specialists for the future.
Our charity needs to raise £50 million every year to help rebuild and refurbish Great Ormond Street Hospital, buy vital equipment and fund pioneering research. With your help we provide world class care to our very ill children and their families.
To find out more about the Arthritis Research UK Centre for Adolescent Rheumatology, go to www.arthritisresearchuk.org.