The experience of living with children with 'butterfly skin'

Epidermolysis bullosa (EB) or butterfly skin disease is a rare disease expressed by a genetic disorder that affects the skin and manifests with the appearance of blisters, wounds and dermatological alterations ranging from superficial to more serious clinical manifestations such as digestive tract involvement or even chronic evolution. The purpose of this work has been focused on knowing what life is like in a family with children with this problem, through the parents. The main themes found were: adaptation to the disease and health care. These themes encompass a series of categories related to the social, emotional, daily life and relationship with professionals that the family experiences on a daily basis. The results found in comparison with the literature on the experience of patients or families with children with 'butterfly skin' show that there are certain themes in common such as the pain of the wound care process or the psychosocial adaptation caused by the disease. There is a need for more training of professionals and even more social support.