Juvenile rheumatoid arthritis (RA) is RA that begins in childhood. It is an autoimmune disorder, which means that the body mistakenly attacks some of its own cells and tissues. It is not known why this occurs in juvenile RA, but some scientists suspect that an environmental factor such as a virus may trigger the condition in genetically susceptible children.
More than half of the children affected with juvenile RA grow out of it, however others can have symptoms continuing throughout adult life. The systemic form of juvenile RA, which is the type of arthritis that Leanne was diagnosed with at age 8, affects approximately 20 per cent of all children with juvenile RA. It is characterised by joint swelling in combination with fever and a light rash, and may also affect the liver, heart, spleen and lymph nodes.
Here Leanne tells of the coping skills that she developed from a young age, and of the full life she aims to enjoy despite the limitations imposed by her arthritis.
Leanne and her family accepted this diagnosis with some relief at the time as, after months of not knowing, they now had an answer to Leanne’s symptoms and treatment could begin.
Leanne is now 28, and in a way sees herself as one of the lucky ones in that she got her arthritis at a fairly young age: ‘At 8, you still don't have much of an understanding of the limitations that the disease will place on you, but you also don't tend to need to give up as much either.’
As a child with rheumatoid arthritis, Leanne found she had to constantly explain why she couldn’t run around or do all the things that the other kids did. And the problem wasn’t in explaining her arthritis to her peers, who were very accepting, but to adults.
‘Children in general are very accepting and it is only as we get older that our prejudices and preconceived ideas of "normal" develop,’ says Leanne.
When speaking of her arthritis to other people, an ongoing challenge for Leanne is not so much in explaining what arthritis is and what it means, but rather in getting people to accept that arthritis can and does affect children and working-age adults.
‘I also find it helps me cope when the pain is really bad. At those times, I focus on all the things that make me happy as a person and in this way, I still have really good days even when ‘Arthur’ is being a major pain in the knee or hip or whatever joint.’
‘I think one of the hardest things for anyone with a chronic illness is to be accepted for who you are and not viewed or judged because of the disease you have. By learning to view my disease as a separate part of me, I believe that for most of the time, I am able to get people to accept me for who I am first.’
The past 2 years have been difficult for Leanne as she is having a major flare of her arthritis and nothing that she has tried has provided any real lasting relief. Leanne does, however, weigh this time against the preceding 8 years during which her medication had been relatively stable: methotrexate (the dosage of which needed to be increased over time) with the occasional short course of prednisone was enough to control any flares.
Coping emotionally with this seeming loss of the promise offered by a medication can at times be a challenge, as Leanne explains.
‘Rheumatoid arthritis is a chronic disease with no cure and a natural part of the disease is a cycle of good and bad times. While I am in a definite flare (bad period) at the moment, I know it won’t last forever and, sooner or later, we will find the right medication mix. In the meantime, you just have to learn to listen to your body and not be afraid to ask for help.’
In dealing with the disappointment that can be felt when the response to a medication diminishes and when needing to face the prospect of trying another medication, Leanne advises: 'You always have to go on believing that this will be the one that works. Even if a medication only helps for one day, it is worth it. My advice to anyone going through this is not to give up.’
Leanne suggests to others recently diagnosed with arthritis at a young age to remember that you are not alone, and to try to make contact with at least one other person with juvenile arthritis; to learn as much as you can about your type of arthritis; to be actively involved, with your parents, in your treatment choices; to discuss your feelings openly with those close to you; and finally, never to lose hope: ‘It isn’t going to be easy and there will be times when you will feel that everything is going wrong and that there is no hope ... We live in an age of constant research and new treatments are being developed all the time. In the bad times, set yourself smaller goals and never be afraid to aim for the stars.’
Being involved in the group has provided Leanne with the chance to meet others going through the same thing, and she appreciates knowing that she now has people whom she can contact and tell exactly how she is feeling, knowing that they will really understand.
‘Everyone has their own ways of coping with chronic illnesses, but I really believe that a support group is important and beneficial. I would encourage anyone with a chronic illness at least to make contact with a support group. Even if you don’t want to attend meetings, you can still make contact with one or 2 others who can help you when you are feeling scared or alone.’
Last Reviewed: 26 March 2003