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The Care of the Rheumatic Child.
“Het Meeuwtje” Belgium.
In Belgium, there are about 2500-3000 children with JIA. Fortunately, Juvenile Idiopatic Arthritis (JIA) does not occur widely. This means that many parents do not know any other people in their surroundings who have to live with this.
They cannot share any experiences with fellow-sufferers and feel alone with their major and minor problems in raising their children.
That is why, since 1993, we have been setting up a network for parents of children with JIA. This initiative was taken after a great many questions had reached us in connection with the problems which parents have, in trying to cope with their child’s disease.
It is not so much the medical difficulties, but rather educational problems which often raise parents’ doubts and sometimes even fill them with despair.
In their everyday environment, they frequently find little recognition and acknowledgment of their problems. Parents and the pre-eminent experts, who know what problems having a child with JIA entails. They have acquired this expertise with ups and downs and have thus gathered a wealth of experience.
As a group they dispose of a huge amount of expertise which enables them to help each other and other people. Parents of children with JIA can learn a lot from each other. The cares which parents of children with this disease have to bear can be a heavy lood.
Talking about big and smaller problems, exchanging experiences and finding solutions from indispensable elements in the contacts with partners in adversity. United they stand!
When your are told as a parent that your child has JIA, there are questions in the medical area, as well as a great many questions concerning the psychosocial functioning of your child:
This is merely a very limited enumeration of the many obstacles facing parents of children with JIA. Parents raise their children. Raising children means guiding them into adulthood.
A child must be able to develop into an adult who stands in the middle of life with self-awareness. Within that context it is important how a child looks upon itself. The identity development is determined by the process of assimilation and acceptance in relation to the illness. In order to mature into an adult who is self-conscious ant in touch with things, self-acceptance and self-confidence are prerequisites.
For some children with JIA means that it has to learn to deal with the fact that the illness will stay with it inseparably. Some of them anyhow get sooner or later into remission. The process of acceptance of the child and the youngster by its environment begins with self-acceptance if sthey are to develop into children and youngster with a positive self-image.
So what we do in Belgium for the parents and the children with rheumatic disease:
We are taking part of the ENCA because we want to learn more about the treatment in other countries, hear about the activities in other countries and listen to their problems. We must go on with more countries!