Behçet’s is very rare; most people have not heard of it and would not know what it means for a child or young person affected by the condition.
There is no doubt that Behçet’s in children and young people can adversely affect their learning, but the good news is that with the right treatment and support, children and young people can participate in school and college life and achieve their ambitions.
The Paediatric Behçet's Team at Alder Hey, EATC4Children, Behçet’s UK and Behçet’s Patients Support have developed a booklet with input from young people affected by Behçet’s.
It will provide a useful tool for teachers of students with Behçet’s, to explain what the condition is and how having Behçet’s might affect a child or young person whilst at school or college.
"On a good day; I can walk without joint pain, eat what I want because I am mouth ulcer free and I have enough energy to tackle exercise and going outside with friends and having fun, a day where I can almost forget I have Behçet’s disease is a good day.
On a bad day; I lie in bed with insufferable mouth ulcers, joint pain makes walking too painful, my stomach will become inflamed, my eyes will be swollen and I’ll have skin lesions all over my legs."
"Just because I could do it yesterday doesn’t mean I can today."
" We should not be told how to feel."
"The pain is not in my head – I’m not lying or making it up – we need teachers to believe us more."
"We are people, not just an illness; we want to know we have a future."
"Chronic fatigue is different to tiredness; I am not tired like 'everyone else."
"Being comfortable is key, we aren’t wearing certain things as a fashion statement, certain clothes make us feel comfortable, we want to wear comfortable things that don’t increase pain."
We are always looking at ways of improving our services to all Behçet's patients.
Feel free to send us your ideas for suitable content for our website.