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Most people are surprised to hear of a child with arthritis though it's actually roughly as common as childhood diabetes.

JIA, or Juvenile Idiopathic Arthritis, is a long-term condition affecting around 1 in every 1000 children. It is an auto-immune condition, where the body’s immune system attacks the body’s own tissues, which can cause damage to joints. The first signs of JIA can be hard to spot as they can come on suddenly or gradually, and so diagnosis in the early days can be difficult to achieve. During a ‘flare’, children can be in a significant amount of pain, as joints swell and become stiff. Symptoms can vary from day-to-day but can also include tiredness, difficulty in physical co-ordination, spike in temperature. Children can find themselves socially excluded as they can’t play ‘normally’ or join in.

My daughter, P,  has Polyarticular JIA (affecting more than 5 joints). She started limping just after her 2nd birthday. She was seen by the GP, who eventually referred her to the Paediatric and Orthopaedic teams at Warwick for some inconclusive X-rays and MRIs. We were then passed to the Rheumatology team at the Walsgrave. At this point, P could barely walk and was in almost constant pain. From her first limp to diagnosis took 6 months.

Initially, P was given steroid injections, under general anaesthetic, in her knees and ankles. I remember taking her to the shops the following day, and was overjoyed that she could get out of her pushchair and rummage through the toys in Asda that she hadn’t been able to get to before! We then found ourselves in a cycle of appointments and check-ups – the number of brilliant NHS departments and staff that support P is quite amazing: Rheumatologists, Play Therapists, Specialist Nurses, Phlebotomists, Physiotherapists, Occupational Therapists and Ophthalmologists. Uveitis (inflammation in the eye) can be linked to arthritis so P is regularly screened for this as, left untreated, it can lead to blindness.

P was on the brink of being signed off in remission, when uveitis was detected. An arthritis flare followed shortly afterwards. The arthritis responded to treatment but the uveitis was harder to control and so higher doses of anti-rheumatic drugs were prescribed. Fortunately the inflammation was controlled with no lasting damage to P's eyes. We’re now 6 years in from diagnosis.  (It’s not possible to accurately predict if P will have symptoms as an adult. In most cases, childhood arthritis has a good outcome. In at least 30% of cases, however, arthritis can remain active into adult life. Some young adults with JIA have joint damage that limits their daily activities to some extent and a few may need joint replacements.)

In all of this P has been remarkable. The symptoms are painful. Some treatments are painful – weekly injections, regular blood tests; some are fun – physiotherapy. All of them take her out of school so she misses lessons and time with friends. But she is one of the happiest people I know. However, she is not very confident in groups and is very nervous of P.E and anything competitive. She knows she’s not very good at sport – the early months of being unable to walk have left her with muscle wastage so she’s not as physically developed as her peers. Sports Day at school is an ordeal. She wants to be picked for teams but worries that she won’t perform well and others will blame her.

And this brings us nicely to parkrun. Unlike school sports, parkrun isn’t competitive. It doesn’t matter if you’re not fast. It’s not a race. It doesn’t matter if you don’t finish.  With parkrun you can just join in. And you can be with all sorts of people who not only won’t judge you but will support you. Perfect for children lacking confidence in sport to be able to participate.

Friday 9th June is #wearpurpleforjia day. On Saturday 10th, we will be running Stratford-on-Avon parkrun as tailrunners. We will be running as a family, supporting P to her 5k finish. We will be wearing purple! If you are parkrunning that day, please wear purple to support P and all the other fantastic JIA children. If you happen to be at Stratford, we would love some company on the final lap. We’re hoping to help her finish but some additional encouragement would be much appreciated!

We really want to draw people’s attention to this condition. It’s not well-known but so debilitating for sufferers. If you want to know more, please see www.jia.org.uk. If you can, please sponsor P to complete her 5k. It would give P some much needed encouragement. And make her (and us) very happy!
Thank you
The Howats xx

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