1) Children with rheumatic diseases face difficulties at school due to a lack of understanding from teachers and classmates about their condition. 2) Their symptoms like pain, stiffness and fatigue are often not believed or accommodated, making full participation in classes and activities difficult. 3) Proper information and support for the individual needs of each child are needed to help them continue their education without discrimination.

1. Children and Juveniles with Rheumatic diseases -school-life- Claudia Grave Gryphiusstr. 2 D- 22299 Hamburg E-Mail: claudiagrave@gmx.de

2. „ Rheumatic diseases in children - nobody is thinking on it!“ This is -since a long time- the motto of the German Rheumatic League in order to give informations about rheumatic diseases in childhood and to improve the situation of the families

3. Difficulties in understandig the problems of children with rheumatic diseases are often being continued at school. Lack of understanding and intolerance are discriminating them. Very often teachers and schoolmates don‘t believe in rheumatism in childhood. Morning stiffness, pain, the necessity of taking drugs or aids are denied. Rheumatic diseases are seen as harmless, because signs of a disease are not- or not yet been seen.

4. Not a long time ago s.b. asked me : Why are you feeding your daughter with a lot of food, allthough she is already very thick. Answering, that my daughter has arthritis and that she has to take drugs which leed to thickness, she said: Arthritis in childhood? That can‘t be true, I never heard about it! And at all, I can‘t see anything!

6. Diana told: My schoolfriends noticed me getting thicker and thicker. They said: You are really very thick and you are looking terrible and all over that your way of walking is looking rediculous. „ We assume that you are just putting it on; you couldn‘t have pain, because you are cheerful and friendly whole the day!“ I was very sad about hearing that!

7. A mother reported: Benny was pushed downstairs, because he didn‘t walk fast enough. The others were threatening against his knees in order to „move“ them. And he was staying lonely on the schoolyard while the others were playing football!

8. But not only schoolfriends do not understand what rheumatism means. Unfortunately teachers often make school life very difficult, too.

9. A mother told: Meanwhile arthritis does belong to our life. Only the school is putting a stroke in our wheels, again and again! Much more accepted is that boy with a leg in plaster. Everybody is considerated against him, teachers as well as schoolmates. But exactly that seems to be the problem of arthritis!

10. A father told: Peter had have a flare up. The paediatric rheumatologist did allow him going to school if Peter could be transported to- and from school and if he could stay at the classroom during the break. The teacher did ignore it, he pushed Peter outside. When we asked him why, he answered: „ Here at school only what I say, goes!“

11. A mother told: The classroom was at the uppermost floor. When I told the teacher that Helen should stay at the classroom during the break he said: If you want Helen to be stay upstairs you have to write down your request every day again, please!

12. The same mother told: I will never forget the class test, when Helen couldn‘t write anymore, because of severe pain in his hand. When she asked the teacher to be allowed to interrupt, she answered: No, you will manage it without interruption. I can‘t imagine that you would like to have a bad mark only because of a little bit pain in your hand“

13. A mother told: I couldn‘t get any support. Nobody was willing to help Ben in case of changing the classroom or going up- or downstairs. So I had to go to school several times per day to help him by myself!

15. Therefore enlightenment at school is necessary!!!

23. When Luisa is coming from school she urgently needs a break. Afterwards she has to go for physiotherapy or she has to absolve the „home training“. Finishing afterwards her homework all her friends are already outside in order to play. And because of pain in her hands she needs additional time because she has to rest again and again. Often it is going on until dinner. But nobody notices that. Telling this to the teacher, she replied: „ When she would work more rapidly, she would finish her homework earlier!“ She dosn‘t accept Luisa to use a laptop as compensation of her handicap and to avoid pain.

24. Teachers should recognize that rheumatic diseases in childhood are impressing, longstandig diseases. Pain, independence, intolerance, lack of understanding and less time for hobbies are often leading into isolation. Missing school, and catching up on subjects leads to an outside position. All over that the development of the disease is not predicticable. Deveplopment at school and profession are uncertain. This leads to anxiety.

25. Therefore we have to inform the teacher about the disease and the individual difficulties and teachers should try to demonstrate understanding and to offer help to the child. In case of hospitalisation all informations should be given to the school at hospital by fax or by mail.

26. But: A father told: The problems started when Alex never got all materials from school. Copying the teacher 3 sheets, we could be sure that there were 6-12! We had to fetch the the others from other parents.

27. A mother told: School at hospital was not able to teach our daughter adequately, because there were no information from school at home. „ It can‘t be expected to our secretary“, the teacher said. And my husband was reprimanded, because the teacher from the school at hospital asked for informations at the school at home.

28. The first day being back at school, she was chased upstairs with her crutches. Two friends who wanted to help her were called on to go away. Anne was reprimanded to put up her feet correctly- „ Arthritis couldn‘t be so worse!“

29. But not only the teachers are discriminating our children but the schoolmates, too. They often are reacting by keeping silent and expelling them or by teasing.

30. A mother told: To round off the daily fight there are the appreciate schoolmates, who are listening when Toby is telling about his disease and why he shouldn‘t go upstairs. But during the first crucial situation.they are calling: „ Grandfather, grandfather!"

31. Patricia reports: When I returned to school in a wheel chair after 8 weeks of hospitalisation, everybody seemed to be full of sympathy. The classroom was located downstairs and a lot of friends acompanied me during the breaks. But that stopped after some weeks! I couldn‘t participate anymore and after some weeks I was uninteresting. It tooks a little bit of time to realize that - and it hurts!

32. When I didn‘t sit in the wheel chair anymore and I asked for going home because of pain, they said: „ I would like to have arthritis, too!“ Some of the teachers meant, that they couldn‘t allow extras anymore. At some time or other I had no mind to beg for everything. I only wanted to be let alone, I wanted to finish school and to work. I will manage it, but I have to fight permanently.

33. I think by these examples do show obviously that a lot of negative consequences could be possible for children with rheumatic diseases at school.

34. It is importatnt to clear up that children with rheumatic diseases do not receive privilleges, but only need support, and that means practicall help.

35. Teachers and schoolmates should know about consequences of rheumatic diseases, especially those affecting school. It should be talked about difficulties to be expected and should be decided together about the needed support. Possibilities of compensation of the handicap is very important-because school means future!

36. And now I am waiting for your questions and I am interested in your experiences at school!?