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.