Mark's Story

My name is Mark and I am 22 years old. I was diagnosed in 1990 (aged 8) with Juvenile Chronic Arthritis (JCA). I am currently taking Arava (20mg daily), Voltaren (50mg twice daily) and Prednisone (5mg daily) for the arthritis. I also take Caltrate (600mg daily), Catapres (100mcg) for sleeping, Actonel (30mg weekly) for my bones and Fish Oil supplements twice a day. In the past I have also been on Salazapyrin, Methotrexate injections and tablets (but both were making me that sick I could not take it anymore) and Thalidomide.

I have been under the care of a number of rheumatologists over the years. Some of these I stopped seeing as they weren’t helping me or I didn’t get on with them but there have been others such as Dr McNeil who no longer had a clinic in my area and Dr Lea who left to have a baby. I now see Dr Johnson and he is fantastic.

My initial symptoms began with me having problems with things like holding my pencil at school. My next major problem came towards the end of my first year at High School. I had been away with my family and had been horse riding. As I got down from the horse, I landed wrong and sprained my ankle. After a few weeks, this had still not healed so I went to the doctor. He sent me for an x-ray and a full body scan. This scan showed potential hotspots of arthritis activity throughout my body. I also required in-patient treatment at the Prince of Wales Hospital when I was 16 or 17 to help get me back on track.

I have had numerous flares over the years and my latest major issue began in January 2003. At that time, my right knee started getting really sore and unstable. My rheumatologist sent me to a surgeon (Dr Walsh) and he sent me for x-rays. His eventual diagnosis was that my knee was falling apart and I either needed a full knee replacement or have the knee fused. While the choice was mine, he felt that the knee replacement was not really a viable option. If I had been 50 or 60, he would have definitely recommended the replacement but he felt that at my age, the full knee replacement would only last me 5 years at most and my knee would be in a bigger mess then than it was now.

After giving me all the information on my options, he sent me away to think about it for a few weeks. But even after this time, neither my mum nor I were sure of what option would be best. So Dr Walsh invited us to the monthly meeting of specialists at Nepean Hospital. Dr Walsh presented my case and sort opinions from the other doctors. But this just left us more confused than before.

The option of fusing my knee would have meant that I could no longer bend my leg at the knee. To try and help me decide if I could cope with this limitation, Dr Walsh arranged for me to have a cast put on my leg. This would replicate the loss of movement I would get from the fusion. But after a week, the cast had to be removed as it had shifted and was rubbing on the back of my ankle. However, the week was long enough to help me make up my mind and at my next visit, I told the surgeon to go ahead and arrange for the fusion.

The first step in the process was filling out the hospital forms. These indicated that the waiting time for a bed would be around 90 days. By the middle of September, I was having trouble coping so my local doctor chased the hospital and I was admitted a few weeks later.

I had my first operation on the 1st October 2003. In this operation, they cleaned out the knee joint and realigned it so that the two ends of the joint were butted against each other. To help them fuse together, they were held in place with an internal brace. For most patients, this would have held fine until the bones fused but because of the arthritis, my bones aren’t that great and it weakened. This allowed the alignment of the bones to shift slightly.

After a two month recovery period, the surgeon was still not happy. Even though the shift in the alignment of the bones was minor, it was enough to be causing pain so he decided to put my leg back in a cast for another two months. It was hoped that this would be enough to push the bones of the knee joint back into place so they could fuse properly.

This new cast was finally removed at the beginning of February 2004 and tests showed that while the joint had begun fusing at one end, there was a 1cm gap at the other. I was given two weeks to see if I could walk on the leg but after a week, I was getting pain in the joint. The only option left was another operation. This time I had to take the necessary forms directly to the hospital and was given an admission date for two weeks time.

The second operation took place in March 2004. They removed the bracing from the first operation (I was allowed to keep some of the screws from this) and, using donor bone, did a bone graft to fill the gap between the two bones. They also drilled out the marrow channel (the softest part of the bone) in the middle of my leg and replaced it with a steel rod. This was screwed in place at two separate points.

Thankfully this operation was a success. My surgeon gave me permission at my check-up in the middle of April to start walking on the leg. A week later I was walking without the aid of crutches or a walking stick. I have one more check-up in 3 months and hopefully that will be the end of this saga.

As well as having JCA, I also have Attention Deficit Disorder (ADD). While the ADD meant I found it difficult to concentrate in class, neither it nor the JCA prevented me from completing High School. However, all of my classes were done through the support unit of Katoomba High School. And in 2001, I was awarded a support Higher School Certificate (HSC).

I have also done numerous TAFE courses since leaving school in an attempt to find a job that I not only enjoy but also that I am physically able to do. These have included a cooking class (got too hard on the legs), accounting (got too hard in the math’s department), numerous computing courses, a reception course and a tourism course. I am going to go back to TAFE next term to do a barman’s course. While I am currently looking for a reception / office position, I am not sure if this job will be suitable as I get sore when I sit for long periods. As such, I have decided to do the Barman’s course as a backup as I find it easier to stand than sit.

In 2001 I went to New Zealand with the Arthritis Foundation for a camp. I did get sick during the camp and this made it less fun for me. Even so, it was a good opportunity and allowed me to meet others with arthritis.

Apart from my studies, I enjoy a number of different hobbies. I took up knitting about a year and a half ago and really enjoy it. I especially like watching a pair of needles and a ball of wool become something. So far, I have made a couple of scarf’s, a beanie, a blanket (made from 81 separate knitted squares) and matching pillow and a jumper. I am currently knitting another jumper, a dog blanket and another blanket made up of squares that I designed myself. I also hope to soon start knitting a pair of socks. My other hobbies include listening to music (my favourites are country and rock) and reading. I also started playing lawn bowls in 2003 but had to stop in August due to my knee. I hope to take it up again from the middle of July 2004.

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The information provided on this site should not replace the advice and guidance of your own health-care providers. All material is provided for educational and informational purposes only and is the opinion of the authors. Please check with your doctor before making any changes to your treatment.

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