Advice
E- What have we forgotten ?
Vaccinations: no problem, they can be administrated as usual
Nails : not too long
The sea : no problem (expect in the case of oozing lesions which will sting)
Swimming pools : no problem, but shower and apply an emollient afterwards.
(if needed, apply a protective cream)
Sport : no problem, as long as there is no excessive sweating, but always shower
and apply an emollient afterwards
At school : inform the teacher (the child should not be next to the radiator, etc...)
and the person in charge of the cafeteria if necessary, etc...
Anything else ?
The role of the therapeutic education workshops is to provide a setting to listen to patients and their parents in order to understand their individual problems.