Last update:
02-Jun-2020

Epidermolysis bullosa is a rare genetic disease, with skin fragility and bullae as the main signs of the disease. Today, the number of patients with the disease is estimated to be 30,000 in Europe and 500,000 worldwide. The types of epidermolysis bullosa are simplex, junctional, dystrophic and the Kindler syndrome. Children with epidermolysis bullosa face various physical and psychological problems, resulting in poorer quality of life compared with healthy children. They have problems in their everyday life, including as eating, dressing, bathing, writing, walking, etc. Increased disease severity and pain, itching and difficulties in bathing and eating are related to reduction in their quality of life. Unfortunately, there is no definitive treatment for the disease, and only symptomatic measures can be applied, such as local antiseptics, smoothing creams and antibiotic therapy in the case of infection. The main aim of the treatment is to ease the symptoms and to reduce complications, including infection. Psychological support of children with epidermolysis bullosa and their families is very important. Methods such as distraction, visualization, virtual reality and use of breathing techniques can help to decrease the children's pain and anxiety.

Key words: Children, Epidermolysis bullosa, Quality of life.