When a child is diagnosed with arthritis, “how can my child have arthritis- that’s for old people”! is a widespread reaction. – The common stereotype of arthritis being a condition that affects the elderly is pervasive but wrong.
March 18th is WORD Day, the international day to promote awareness of arthritis and other rheumatologic diseases in children. Arthritis New Zealand in partnership with the National Paediatric Rheumatology Service, recently held a camp for children with arthritis. At this camp, children talked about what it is like to have arthritis and a number of them spoke about the surprise that family, school and friends have when they learn that a child has arthritis.
The children at camp talked about how important it is to learn that other kids have arthritis, and they are not alone. Often, they have not met another child with the condition, and it can be a big relief to know that others are walking the same journey. They also talked about how arthritis can affect their schooling and how important it is to have school support and understanding that one day they can be fine and the next they can be in pain and unable to do some activities.
The most common form of arthritis in children is juvenile idiopathic arthritis (JIA), and it can even occur in preschool children. The latest research in New Zealand indicates that approximately 700 children have arthritis. A diagnosis can take time as other diagnoses are investigated and eliminated, and this can be a very anxious and frustrating time for families.
The symptoms include pain, swollen joints, stiffness, fatigue, loss of appetite and high fever and skin rash – these can vary according to the severity of the condition. Uveitis – an inflammation of the eye – may also occur and if not treated uveitis can cause vision loss. Children may also need regular injections, and this can be a stress for both the child and parents who are taught how to inject their child.
Dr Anthony Concannon, team leader for the Starship branch of the national paediatric rheumatology service, says that early referral to specialist rheumatologists and early diagnosis is essential. He says that rheumatologic conditions can be difficult to diagnose, meaning it can take some time before treatment can start. The evidence shows that beginning treatment quickly and gaining control of the disease early improves outcomes.
Children and families with rheumatologic conditions such as JIA live with a diagnosis which is chronic and can fluctuate from day to day. It is well-recognised that having a chronic condition such as arthritis can impact on children and young people’s confidence and ability to participate in everyday activities. While current treatments mean the outlook is overall good, ongoing or recurrent pain, stiffness and fatigue can, unfortunately, be a significant part of life for children and young people affected. Some of the treatment effects can also be challenging to live with, nausea and having a suppressed immune system being common issues. Some of the medicines need to be given by injection or intravenously, so children and their families may also need to learn how to cope with regular injections. This means support from a variety of specialist health professionals is required to help them adjust to the diagnosis and find strategies to help them cope.
Jack Maynard from Auckland is 15 years old and was diagnosed with JIA 11 years ago, meaning he has grown up with the condition and does not know a life without it – which might be why he has a positive attitude towards living with JIA.
Jack is an avid sailor and qualified for World Championships in 2015 and 2018. While he says he doesn’t let arthritis get in the way of his sailing, it does get in the way at school.
“I have missed school because I wake up in the morning and my joints hurt too much, I can barely walk. On those days, I rest and find ways to take my mind off the pain. I try to minimise my days off by keeping active and moving my joints. If I’m hurting in class, I ask my teacher if I can get up and walk around the classroom to loosen up my joints”.
Jack has attended three Children’s Camps, a Teen Camp and this year, he returned as a youth leader to offer his support and advice to younger children living with arthritis.
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