Arthritis Research UK held their grand opening of a new centre yesterday; the world’s first centre dedicated to adolescent Rheumatology. Working with doctors and patients at Great Ormond Street Hospital, University College London and University College London Hospitals, the centre aims to fund research into how and why arthritis affects young people.
Taken from the website:
What will the Centre do?
Up till now adolescents with JIA and other rheumatic diseases have been a forgotten group when it comes to care and research into their conditions. There are a lot of unanswered questions about how and why arthritis affects teenagers.
• Clinical trials have overlooked teenagers, so treatments used to treat young people are based on research carried out on adults and children.
• The lack of specialist adolescent rheumatologists means that young people are often treated by people who are not experts in their condition.
• We do not know enough about the long term effects of having JIA as a teenager.
• We do not know why arthritis can be more severe or why some forms are more likely to occur in adolescence
By focusing attention on understanding why and how arthritis is different in adolescence, and what happens as young people with arthritis enter adult life, we hope that the Centre will dramatically improve treatment and care for young people.
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This is a huge step forward in the funding of research and treatment of Juvenile Arthritises, including Still’s Disease (Systemic Juvenile Idiopathic Arthritis) and hopefully will help more people recognise that Arthritis isn’t just a disease of the elderly but affects younger people too. Plus adolescents are often caught between both worlds – that of the Children’s Hospital and the Adult, which can be frustrating and isolating; not to mention that the transition between the two can be a scary experience.
A middle ground, specifically for adolescents, is something that we longed for during my own teenage years, when I was often placed on wards with much younger children, or in some situations – such as emergency or surgical – with mostly old people. This doesn’t help project an image of arthritis not being an old person’s disease.
And there are so many other issues that you face as a young person with Arthritis, that they hope to be able to manage better through this project. To mark the launch of the new centre, Arthritis Research UK contacted me to ask if I could look back on my own experiences as a teenager with Arthritis and post about them here; and so over the following week, my blog will be taking a look at a few of those issues.
Here’s to the new centre and all the progress it brings,
L
