Background: Literature on the scientific study of inherited epidermolysis bullosa (EB) from a psychosocial point of view is still very rare despite the consequences that this disease may have. Consequences not only in the physical area, but also in development and behavior, both personal and relational, of the patients themselves; consequences for their possibilities of social and occupational affirmation; and consequences for the people with whom they interact, especially those who are particularly important for them. Patients and Methods: This study refers to a group of 20 patients with EB (simplex, junctional, and dystrophic), 15 females and 5 males, aged between 7 and 52 years (average age of 20.6 years), who were hospitalized in our Institute during the period 2000/2001. In order to identify if specific and significant characteristics and/or psycho-social-relational problems exist in these patients we carried out a psychodiagnostic interview with each of them and applied graphic tests and the Psychodiagnostic Test of Rorschach. In the case of the younger subjects we also carried out an anamnestic interview with their parents. Results: The results obtained so far, even though they must be considered as only quite preliminary, appear noticeably consistent in themselves. The majority of these patients with EB show an intellectual development above the norm, an adequate scholastic and work achievement, a normal affective maturity, a development and social adaptation consistent with their chronological age, and the absence of structured psychopathological disturbances. It also appears clear that these patients are able to accept their disease in a positive manner and to confront the consequences with an aware commitment. They display adequate levels in all areas of personal development as well as of social integration and affirmation, often definitely above the norm.

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© 2002 S. Karger GmbH, Freiburg
2002
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