[EB care by a home care nurse: mission impossible?].

Hereditary epidermolysis bullosa is also known as the "butterfly child" disease. By no means bucolic, the expression of this cruel pathology makes the lives of affected patients a daily struggle against sores covering the body, causing pain and requiring conscientious care. Like the disease itself, the care provided by a nurse at home is heavy, complex... and rare. Preventive care, education, assessment and dressing repairs are all part of nursing care, but are mainly carried out by relatives, or even by the patient him/herself. A further burden for these people, who are heavily impacted physically, psychologically and socially.