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.
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. One for at home and one for at school. In this way, books do not have to be carried back home.