[Hereditary epidermolysis bullosa in children]. / L'épidermolyse bulleuse héréditaire chez les enfants.

Hereditary epidermolysis bullosa (HES) is a heterogeneous group of rare genetic disorders characterized by localized or generalized fragility of the skin and/or mucous membranes, varying greatly in severity from one form to another and even within a subgroup. Skin wounds can be a source of pain, pruritus and discomfort from birth. Progression varies from patient to patient and from form to form. Specific care must be provided from the neonatal period onwards, and throughout life, to aid healing and limit complications. Nurses are at the heart of skin care for HES patients, and must be familiar with the main principles, while adapting to the individual.

[Education on caring for children with inherited epidermolysis bullosa]. / L'éducation aux soins des enfants atteints d'épidermolyse bulleuse héréditaire.

Inherited epidermolysis bullosa is a rare dermatological disease that requires specific daily care. An education programme teaches parents how to bathe their children in optimal conditions described in a care protocol that encourages contact and promotes the parent-child relationship.