NSW Young Adults with Arthritis Support Group

Providing Support and Information for 18 - 45 year olds with Arthritis and their Partners

Leanne's Story

For the first 8 years of my life, I was a normal, happy and healthy child. My only association with pain and illness was a broken collar-bone and the normal childhood illnesses. Then, for no apparent reason, I began developing very high fevers which would subside for a while and then reappear. I also developed a widespread, pink, non-itchy rash and joint pain. The thing I remember most about the initial joint pain is that if a joint in my left leg was affected, a joint in my right arm would also be affected (and vice-versa). It was very rare for all the pain to be on one side of my body.

For the next few months, I was unable to go to school and, instead, would spend my days in bed or at the doctors. Like many doctors at the time, my GP was totally closed off to my parents suggestion that I could have arthritis. Instead, the doctor thought it was more likely that I had some form of Leukaemia due to my very high white blood cell count. My parents were aware that arthritis does occur in children as my dad has a cousin who also developed the disease as a young child and so they continued to suggest this option. Finally, my GP agreed to refer me to a paediatrician who agreed with my parents belief that I was suffering from Rheumatoid Arthritis. He recommended I be referred to a Paediatric Rheumatologist. My GP still did not accept this diagnosis and was reluctant to follow his recommendations. It was only due to my parents persistence that my GP finally (and reluctantly) agreed to give me the referral.

Luckily, we found a Rheumatologist in Sydney who specialised in children with arthritis and an appointment was set up. After reviewing my history and seeing my rash, this Rheumatologist was able to confirm my parents belief and I was diagnosed with a form of Systemic Onset Juvenile Rheumatoid Arthritis. In fact, I had all the classic symptoms of this type of arthritis. Finally, we had the answer and I was able to start treatment.

In a way, I see myself as being on of the lucky ones in that I did get my arthritis at a fairly young age. At 8, you still don't have much of an understanding of the limitations the disease will place on you but you also don't tend to have to give up as much either. At the time I was diagnosed, I was only just becoming interested in joining activities such as netball and Physical Culture but I hadn't actually started either of them. Once I got sick, these types of activities ceased to be an option for me but because I hadn't really got involved, I didn't feel the sense of loss that someone who is diagnosed later in life tends to.

For me, arthritis just became a part of my life but I didn't let it control me. In a means of separating myself from the disease and as a way of helping to explain it to other people, I gave my arthritis a personality of its own. In a sense, my arthritis, whom I dubbed "Arthur" (as in Arthur Ritis) became very similar to the invisible friends that many kids have at one time or another. It also made it easier on the bad days to be able to get mad at Arthur rather than at a "faceless" disease.

Like most new arthritis patients, my first course of treatment was high dose aspirin. This formed the basis of my medication for a number of years and worked reasonably well for in reducing the symptoms of my arthritis. The only downside was the size and taste of the tablets which were difficult to swallow and quick to dissolve in your mouth. To get around this, my mum used to crush them for me in honey which was so much easier for me to take.

I don't have too many specific memories of the first 4 years of my disease other than the fact that my Rheumatologist kept telling me that many children grow out of their arthritis once they hit puberty and that if I went into remission and stayed in remission for 2 years, the disease would be unlikely to come back. With almost perfect timing, I did go into remission when I was 12 and after 2 years I felt like celebrating. However, just a further 2 months down the track, Arthur returned with a vengeance. Again, the first symptoms were in my knees which swelled to many times their normal size and resembled soccer balls more than knees. This time I was referred to an adult Rheumatologist who confirmed that the disease was active again. This was also the first time that I had to take cortisone to get the disease back under some type of control. Since that time, I have been on constant medication of one type or another although I did get to a period where I only needed to take high dose aspirin.

Over the past 20 years, I have been on almost every type of Arthritis medication available. In general, all have provided some relief for a while but the effect diminishes over time and my Rheumatologist will either switch me to a new drug all together or add a different drug to my regime. The only treatments I have not tried are those involving injections and gold. Since 1993, I have been taking a combination of Naprosyn (a NSAID) and Methotrexate (a DMARD) and in 2001, we added Arava (also a DMARD) to the mix. I also take cortisone during flares.

While my arthritis does place some limitations on me, in general I can do most things that a "normal" person could with some modifications. The biggest restrictions come in terms of physical activities such as playing sport but I still love to go bike-riding and bushwalking when my disease is not too active. I have also completed a university degree and I work full time. Last year I got married and my husband and I are now saving for our own home and planning to start a family in the next few years.

Return to List of Stories

Disclaimer
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.