Juvenile rheumatoid arthritis: Leanne's story
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.
Arthritis at age 8
Leanne was only 8 years old when she began to develop some unusual symptoms — very high fevers which would subside for a while and then reappear, a widespread, pink, non-itchy rash and joint pain. It took several months of uncertainty and time off school, and finally a referral to a paediatric rheumatologist before Leanne was diagnosed with a form of systemic onset, juvenile rheumatoid 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.
Some resourceful coping skills
To help Leanne accept and understand her arthritis, she found it easier to separate herself from her illness, and in fact to name it and give it an identity separate to her own. So, Leanne’s arthritis became ‘Arthur’, as in ‘arthur-itis’. Leanne feels this was very much about realising that her arthritis does affect what she does and how she does it, but that it does not define her as a person. By separating from her arthritis in some way, Leanne also found it was easier to direct the anger and frustration she often felt at the disease, rather than at those closest to her. To this day, Leanne still largely views her disease in this way.
‘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 medication challenge
Like many people with rheumatoid arthritis, Leanne has experienced several medication changes. During the past 20 years, Leanne has followed what she sees as a ‘fairly typical’ medication path: from the use of high-dose aspirin to the non-steroidal anti-inflammatory drugs (NSAIDs) to NSAIDs in combination with disease-modifying drugs (DMARDs). She has also used prednisone when a flare starts and analgesics for extra pain relief.
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.’
Achieving in life
Leanne has completed a university degree and works full time. Last year she was married, and she and her husband are now saving for their own home and planning to start a family in the next few years. When asked about her strengths, Leanne says if she had to pin something down it would be that, for most of the time, she feels she can keep things in perspective: ‘I know that the arthritis is just a part of my life that I have to accept and accommodate; being bitter and angry is not going to make it any easier ... You only get one shot at life and I am determined to live mine to the best of my ability.’
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.’
Sharing with others who have arthritis
Leanne has recently become involved in the NSW Young Adults with Arthritis group, which she co-founded in 2002 after meeting another young adult with arthritis at an Arthritis Week event.
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.’
Accepting limitations
Leanne is determined in her approach to achieving a full life and clear in her acceptance of her arthritis: ‘The biggest thing is accepting that you are going to have limitations (even if they are only temporary ones), but once you have learned what these are, learned to accept them or found ways around them, and realised that even "normal" people have things they can’t or won’t do, then it is very easy to lead a full and productive life.’
Last Reviewed: 26 March 2003
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