Living with Juvenile Arthritis

10. JIA-related challenges When newly diagnosed, it’s a good idea to think about who needs to be told what and why. The “why” in practical terms will help the person who receives the information understand the impact JIA has on your child and their role in providing suitable support.

JIA is not as common as some other childhood conditions and so there is a good chance that other people in your child’s life will not have any knowledge of the condition. For example, there could be frequent hospital and GP visits and there may be limitations on what activities your child can take part in during the early period following diagnosis whilst the treatment plan is settling in. Children and young people may experience pain and restriction in getting around and just doing normal day to day activities.

Long-term conditions like JIA don’t just affect the child; the whole family is affected. The family could be involved in major changes to priorities and daily schedules. It’s important to understand the impact that looking after your child and understandably giving them extra care and attention, can have on their siblings. It can explain changes in behaviour which may seem less than helpful at times.

With younger children, it might be useful to keep a diary of how your child is feeling. There are some good “feelings” information sheets you can download from the internet to help with communication and understanding.