Juvenile ideopathic arthritis
How is it treated?
Ideally the children and young people will have a strong team of health professionals to provide a co-ordinated and complete treatment and care package. In the real world it is doctors who see these children. They make the diagnosis and supervise both the medical and more holistic treatments for children with JIA.
However, to offer the best standard of care for children with JIA, there is a real need for a variety of professionals to make up a team looking after these children. Most importantly there is a real need for a specialist nurse with the knowledge and experience to give the children the care they need. There is also a desperate need for physiotherapists specialising in JIA to not only deal with the inflammation in the joints but to deal with the consequences of this in order to allow the child to lead as fulfilling a life as possible.
There are newer treatments becoming available for JIA and the improvement in the treatment of children with JIA may be put down primarily to the development of new and better drugs. However, in order to use these drugs and develop new and better drugs in the future, specialist centres must push forward the boundaries in improving the care of these children by doing research. This involves a huge amount of paperwork to keep detailed records over many years that must be available for public scrutiny. Currently this paperwork is done by specialists taking up many hours of their valuable time, which could better be used to see more young people. This is holding back the use of new treatments.
Arthritis Research Campaign
We have several links for young people or their families
Our young people’s homepage Arthrititis Trust Research UK Young People
Specific pages on JIA or aimed at parents Arthrititis Trust Research UK Parents
What it means for these kids…
Children with JIA suffer with considerable pain and disability. Some get better with treatment and care. Unfortunately others need their joints replaced in their childhood and early adult life.
JIA does not just affect the joints, but can affect other organs including the eyes. This can lead to cataracts and blindness in early life. The most severe forms of JIA can be fatal. The disease is treated with powerful drugs that can have side effects. Both the disease and the drugs to treat the disease can have a considerable effect on a child or teenager’s ability to develop. This can be devastating.
This has considerable repercussions for their life as an adult and in particular their ability to form relationships, be independent and one day have their own family. Children may not be able to grow and participation in sport and recreation can be a real problem.
The strain on the family unit of many years of poor health, considerable disability and frequent hospital visits and can be shattering. Over one third of these young people will continue to have JIA into their adult life.
Information on Paediatric Rheumatic Diseases
‘Children with juvenile idiopathic arthritis (JIA) frequently continue having arthritis throughout the adolescent years and often develop JIA during adolescence. Understanding how arthritis progresses throughout adolescence and beyond and understanding the effects of chronic arthritis on the physical, psychological and vocational development of the developing teenager is critical in being able to help improve the care of teenagers with JIA.
This can only be achieved through developing a dedicated scientific and clinical research programme that has a specific focus on adolescent rheumatology and encompasses the whole adolescent age spectrum. Such a programme of research at present does not exist. The Adolescent Rheumatology Unit of University College London Hospital and the Paediatric Rheumatology department at Great Ormond Street Hospital (GOSH) have been working very closely together to try and bridge this gap in rheumatology research.
CAT is funding Ania Radziszewska, a research associate whose remit is to bridge this gap and facilitate research between these 2 Centres. It is the first research post of it’s kind and CAT is funding Ania for 12 months. Ania splits her time between UCLH, working under Dr John Ioannou (Academic Lead in Adolescent Rheumatology) and ICH/GOSH working under Professor Lucy Wedderburn (Academic Head of Paediatric Rheumatology). Ania’s remit is help Dr Ioannou and Prof Wedderburn set up the first dedicated adolescent rheumatology research database and biobank of samples from teenage patients with rheumatic disease, which is a necessary pre-requisite to then addressing a number of crucial research questions that will ultimately help in improving the care of teenagers with arthritis. It is the first important step in what hopes to be a wider programme of research within Adolescent Rheumatology that bridges UCLH and ICH/GOSH.’
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