250 children contract childhood rheumatism every year.
Now people who became ill forty years ago are being examined. The hope is that the treatment can get better.
– Of course, you have been in a lot of pain. I’ve had surgery and received treatments throughout my growing up, actually, says Caroline Larsen.
As a five-year-old, Caroline Larsen, 48, had such pain in her hip that she could not walk. It was established that she had JIA, juvenile idiopathic arthritis, also called childhood rheumatism. Throughout her upbringing, she was hospitalized several times a year and sometimes for long periods.
The understanding of the disease has not always been there.
– You could get comments like “you can’t have rheumatism when you’re that young, only old people have it”. They forced me to participate in activities in class which then made me sick and this was despite the fact that we had clear medical certificates from the beginning, says Caroline Larsen.
Adults with childhood rheumatism are surveyed
Each year, approximately 250 children are diagnosed with childhood rheumatism. At Lund University, a study is currently underway on what happens when children become adults.
– You can have functional impairment in the hands, arms and legs. We will map whether you have an increased risk of cardiovascular disease. You can have eye problems and we have seen that some have it even into adulthood, says Helena Tydén, rheumatologist and researcher.
Hope for new treatment guidelines
In the autumn, the first results will come and the hope is that treatment guidelines will be developed for adults with childhood rheumatism.
– There is a lack of knowledge today about how these individuals feel. If they have ongoing pain that could be related to active joint inflammation, then it needs to be treated. If they have pain that is not related to active inflammation then we may have to treat differently. We want the patients to have as good a quality of life as possible in adulthood, says Helena Tydén, rheumatologist and researcher.
For Caroline, research is of course important, but also that the disease is noticed.
– It’s a very stressful disease, so I think it’s super important that you raise this and increase understanding, says Caroline Larsen.