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November 2003

Ben Horgan,
Juvenile Arthritis Coordinator,
Community Support Group Officer,
Australian Ambassador for the Bone and Joint Decade,
Arthritis Foundation of WA

Ben walking with his dog Axl, at Sorrento Harbour in Victoria.

All the way with JRA!

A corny title I know but it's true in many ways. When you suffer from Juvenile Rheumatoid Arthritis (JRA) as I have done for nearly 30 years with no memory of anything else, everything you are going to do in your life is going to need to be worked for, and I mean worked hard.

I was first diagnosed in Melbourne in the beginning of 1973. I had an elbow and a knee initially affected but within a year it spread throughout my body. My parents were both fighters and while there was little information available at the time, they searched for all the guidance they could to get me through this terrible onslaught.

We moved to Sydney shortly afterwards, where it was believed at the time to have a better paediatric rheumatology team. I was put on gold injections and was helped dramatically until I was a teenager when the benefits seemed to decrease. I was in remission for most of my primary school days, until at 12, I was struck by a massive flare, which sent me into a wheelchair for the first time. I was lucky to have inherited my parent's strength and determination and after 12 months of hard physiotherapy and the threat of hip replacements I was back on my feet. Tragically it didn't last long and after a nasty dose of the flu, the disease became fully active again. I was 13 and in a wheelchair after a year of solid torture, and totally pissed off.

During my time rehabilitating Mum somehow found the time to write a book on Juvenile Arthritis and founded Australia's first parents of Arthritic children's group. We were invited to America to attend their first Annual Conference on Juvenile Rheumatoid Arthritis. It was there that I regained my motivation to get on with my life and I vowed to return for the next conference walking unaided. A promise I kept just 12 months later. Thankfully I have never had to use a chair for any length of time since.

I returned from my second trip motivated again to make a difference. Not this time for myself but for others in my situation. I was very unsatisfied with the amount of time being put into the kids who were suffering from this disease. Doctors and physios were being educated on the subject, parents had access to support groups and educational information but nothing was being done for the kids themselves. I found this totally ironic. So along with a group of friends I had met through my times at the hospital, we formed a committee and organised the World's first Juvenile Arthritis Youth Forum.

After 6 months of hard fund raising and organising we hosted 88 participants from all over Australia and New Zealand. All participants unanimously voted the forum a complete success at the culmination of the weekend and recommended that the concept be continued on an annual basis, which it has done. The next is Camp Footloose in Wellington in October.

This was the most inspiring achievement I have had the opportunity to be a part of so far in my life. I received many accolades from my peers for my efforts, including receiving the youth award at the 1985 New South Wales Children's Week Awards and being invited back to America in 1988 to lecture and run workshops on running such Forum's for kids by kids. The greatest reward I received however was the feeling of belonging I enjoyed and embraced whilst attending these camps.

To have a childhood with Arthritis is almost impossible but at these camps the children were given the chance to be just that, and when someone replies 'that's OK I understand' they really do. Two companions you share a lot of time with as a child with JRA are loneliness and suffering. Neither of these ugly bedfellows was invited when we all got together.

Through my work with the Forum's and promoting Mums book I had the chance to get involved with the media. I fell in love with radio and decided to have a go at making it my profession. I started training after I left school and soon became an integral part of my local community radio station. I was fortunate in 1992 to be invited to attend the Australian Film Television and Radio School's full time radio coarse, an honour that only 12 people a year are bestowed. I was lucky to actually pass the course as I spent the year head over heals in love, and madly courting with my now wife Emma, who I had just met for the first time at a Forum in Perth.

We moved to Perth not long after the course finished and I eventually got my first paid announcing spot on 98FM in Geraldton, WA. In my four years at the station I became Production Manager and held down nearly every shift at one time or another. We had our first son, Joel, in 1997 and in 1999 moved onto greener pastures in Kingaroy, QLD. I was breakfast announcer and Program Director for just over a year when the use by dates on my hips finally expired. I was forced to leave Kingaroy and return to Sydney where I had kept in touch with my professional team and had several familiar faces to help me through it.

The hips are all done now but unfortunately like a run down car I keep having to replace something and both my knees are now on the chopping block, so to speak. I am still dabbling on radio with a weekly spot, Sunday nights on 2UE, with George Gibson, but am more excited with having another opportunity to help sufferers of JRA. I guess I feel I've had a break to set myself up, which I feel I have done, after 2 kids and 5 years in radio around the country, it's now time to put a little back again.

Kids helping kids

I have always been an advocate of kids helping kids, and that is what I would like to achieve. We need the kids who are suffering from this terrible disease to tell us what they need and we need to provide them with the infrastructure to be able to provide themselves with the solutions.

These kids are stronger and more determined than you can ever imagine and we should use these strengths to there greatest potential. The Arthritis Foundation of Australia is here to help many sufferers of this dreadful disease, including the children. Let's get them involved. As anybody with arthritis will tell you you've got to help yourself before anyone else will be able to help you in return. So lets give the kids a chance to be heard and you never know we may learn a thing or two along the way.

Arthritis is not just an "old person's" disease

Arthritis is a huge problem in Australia today, as it is around the world. The World Health Organisation has labeled arthritis an epidemic. A recent Access Economics report has shown that Arthritis costs this nation 9 billion dollars every year. Yet people believe that arthritis is simply a fact of life that will affect you in old age but hopefully not make you old before your time. This is totally wrong!

Arthritis affects twice as many people of working age as it does the elderly. It also affects 1 in every 250 children and yet 3 out of 4 children with the disease are not diagnosed properly causing major joint damage.

Ben and wife Emma at the Juvenile Arthritis Forum.

Early intervention

Having lived with arthritis for over 30 years (since I was 2) I know intimately the problems it can cause. The great news is that something can now be done. However, early intervention is vital.

Australians are a very proud nation full of the ANZAC spirit. We soldier on through many adversities and put up with far more than we need just so we can say we got the job done with as little fuss as possible. However, 'putting up' with the pain is not the best way to manage arthritis. Its important to see a doctor early enough to prevent damage to the joints. This is what the Arthritis Foundation of Australia advocates above everything else.

In recent years, Arthritis Foundation sponsored research has also been able to identify the precise cells that become the 'troublemakers' within joints, so its possible to 'turn them off' and reduce a great deal of the damage that arthritis is capable of causing. This treatment is not suitable for everybody but there are a vast number of very effective treatment regimes available to help people to deal and survive their arthritis with very little joint damage.

The Arthritis Foundation in Australia has branches in every state, and similar organisations exist in most countries. They are available to offer help but you must also help yourself. Seek assistance from your local doctor if you feel any pain in your joints. Just because you have arthritis doesn't mean your getting old.

So lets do something about arthritis. Lets shorten the waiting lists for surgery, lets stay at work longer with less sick days, lets get the kids the diagnoses that they need and lets save this country a fortune and save ourselves from a life of pain and lost independence.

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