The last weekend was a whirlwind of activity as Dr Tang Swee Ping (Malaysia's only paediatrician specialising in rheumatology) and I concluded the JIA Independence Camp for teenagers, our third camp. The first camp was held in 2006 at Awana Resort, followed by another in 2008 at the Kuala Selangor Nature Park.
JIA means Juvenile Idiopathic Arthritis, which simply means childhood arthritis. See the word Idiopathic in the middle? Sounds idiotic, right? Rightly so, because no one knows why it happens. I was shocked too when I first heard about it many years ago.
How in the world did I get involved in JIA? It all began with my involvement with the Arthritis Foundation Malaysia in 2003. Two years later, AFM founded the JIA Junior Club, headed by Dr Tang who had just returned from UK then. The first activity we conducted was a visit to Shah Alam's Breadtown, where I encountered JIA patients for the first time.
Some looked normal, others had disfigured fingers, knees or hands. Some were extraordinarily small for their age, an effect of long-term use of steroids as a result of late diagnosis and treatment. It was heart-breaking to know these kids have a lifetime of challenges ahead of them.
Many of them rely on heavy medications to stay normal (get out of bed, go to school, walk, meet people, etc), some taking as many as 9 pills/tablets a day. Others need regular injections in Selayang Hospital where Dr Tang practises. Imagine living in Kota Baru or Alor Setar, and having to come to KL for your child's treatment every other month. I feel for both the parents and the patients.
When Dr Tang suggested having the Independence Camp similar to the ones done in UK, I was intrigued. These kids are often deprived of the chance to partake in any form of outdoor activities because parents and teachers were afraid they would get hurt or suffer the consequences (more pain from strain) afterwards. Our camps always included activities such as horse-riding, flying fox, telematches. Under the watchful eyes of doctors and nurses (plus a bagful of medications, just in case!), parents agreed to leave their special child in our hands for 3 days.
That was how we ended up being long-term 'partners in crime'. With hectic schedules, we were often like mad women during the months prior to the camp, as we got everything organised from scratch, keeping costs as low as possible to avoid draining the NGO of its precious resources. With each camp, we promised we'll never do anything as crazy again.
BUT with each camp, our commitment seemed to grow instead. It was not hard to see why- we had seen with our own eyes how each kid who attended the camp changed- developing self-confidence, assurance and independence.
The recent camp was indeed the cherry on the cake when we met many of the patients who had been attending our camps since 2006.
The sweetest part was seeing how they had grown physically and emotionally: lost their shyness, became more vocal and matured, had better postures. The fact that they could prepare a powerpoint presentation in a jiffy, sms to say 'thank you' to us after the camp and join us in a FB page are promising signs that they have gained part, if not all, of the independence skills we tried so hard to impart.
Afterall, they will be living with arthritis for a lifetime. They need to know how to manage their own disease, lifestyle and medications because their parents cannot be looking after them for a lifetime.
During a Q&A session at the 2nd camp in 2008, I was awakened to the fact that these kids have needs and desires just like any other kid, as they asked questions such as - "can I work? can I have boyfriends/get married? can I have children? will my children in inherit my condition? do I have to take my medications forever?"
Many of the kids who joined us last weekend will probably not join us again, as they reach adulthood and continue their treatment with rheumatologists who handle adult arthritis. Our only hope is that our camps have helped them realise JIA does not hamper their progress, as long as they know how to manage their disease well from young.
As they say, teach a man to fish and he eats for a day. We hope the fishing rods we've been handing out will come in handy, both for the patients and the kids, for a lifetime.
The next time you meet a child who says he/she has arthritis, don't be surprised or skeptical. It happens. Be supportive and encouraging, even when they look or move differently. They have been through a lot of pain, discrimination, prejudice and tears to get to where they are today. Give them a break!
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