Epidermolysis Bullosa Home Care Standard care plan patient information At school

Because of the effects of the disease, patients with EB are not always able to
join in and go everywhere. They have to adjust their daily activities, hobbies, choice of career, holiday, etcetera.

It means the immediate environment must become aware of the patient's restrictions and bear them in mind. The patient with EB finds it often difficult to explain to an outsider how it feels to have the disease or how they are afraid to express which problems they are confronted with. Because of this people often feel lonely. Some patients tend to increasingly withdraw from other people.

Aspects involving education / school

If the physical condition does allow it, children with EB usually attend a mainstream school. Their school performances are comparable to that of other children.

The following aspects deserve special attention at school:

• inform pupils and teachers about the disease and the risks of blistering (prevent pushing and pulling by other pupils);

• heat and sunlight are risk factors for the development of blisters. The patient should therefore not be placed by the window in the classroom

• allocating a fellow-pupil who is prepared to help the patient in class (for example, connecting the computer and printer, carrying of the books, pushing the wheelchair, etcetera);

• purchase of an extra copy of a school / study book. One for

at home and one for at school. In this way, books do not

have to be carried back home. A schoolbag is often heavy to

carry and carrying a schoolbag may cause blisters;

• if the patient is wheelchairbound, the placement of slopes is desirable;

• let the patient use the passenger lift (if present);

• installing cushions on the seat or adapted furniture;

• installing a first aid kit on a regular place in the building and explaining to the teachers what to do in the case of emergencies;

• providing a possibility for storing the scooter mobile (if the patient uses this) or a bike near the entrance;

• create as much safety within the school as possible. There might be an area where the child can play during breaks, without running too much risk of injury;

• patients may sometimes not be able to stick to the lessons because:

- the care of blisters and wounds in the morning is intensive;

- blisters and wounds require care during the lessons;

- patients depend on the timetable of special transport.