Across the UK, around 15,000 children and young people are diagnosed with an autoimmune condition called juvenile idiopathic arthritis. That’s 1 in every 1,000 children who live with this painful and debilitating disease.
For many families, having a child diagnosed with juvenile idiopathic arthritis (JIA) is a frightening time. It can be hard to access information about the condition and what the future holds.
UK charity Juvenile Arthritis Research aims to end this uncertainty and confusion. They have launched a new information booklet called My JIA. The booklet is available free from their website at www.jarproject.org/myjia. It is a comprehensive guide to living with juvenile idiopathic arthritis (JIA).
My JIA is aimed at anyone who has been diagnosed with juvenile arthritis, as well as their parents, carers and schools. It is packed full of information that will help children on their own personal journey with JIA, from diagnosis through to treatments and looking ahead to the long-term. All of the information has been checked by a multi-disciplinary team of health professionals, as well as patients and parents, and will help families understand the condition better.
The booklet contains a section aimed at managing JIA in schools. Many schools will not know about juvenile arthritis, but the chances are they will have a student with arthritis at some point. School plays a big part in the lives of most children. Children with JIA face more challenges than most of their peers, so it is important for school staff to understand what JIA is and how to best support children with the condition.
It is not always obvious that someone has JIA. On some days they will look and act like any other child. But on other days they might struggle. JIA can cause pain, fatigue and reduced mobility, which can be worse on some days than others.
Although it has only just been launched, Juvenile Arthritis Research have already received positive feedback. Parents have said “It’s amazing! I wish something like this was around when my son was diagnosed.” and doctors have said that it is a much-needed resource.
Richard Beesley, founder of Juvenile Arthritis Research explains:
“Being told your child has juvenile idiopathic arthritis can be a particularly difficult time for families. Many people have not heard of the condition, and don’t know what to expect. We produced My JIA as a resource to help them. We wanted to make sure they had the key information to hand, all in one place. Electronic copies are available free from our website, and we would love for families to download and share the booklet with their families, friends, schools and communities to help make life easier for children with arthritis.”
Juvenile Arthritis Research is a charity searching for a cure for the disease, whilst raising awareness of the condition and providing support to children diagnosed with JIA.
You can find out more, and support Juvenile Arthritis Research at www.jarproject.org