The Xeroderma pigmentosum syndrome: an experience of integral attention to children with special needs in Cuba

Resumen

Aconsiderable part of the bibliographyat present refers to the clinicalgeneticdescription of the Xerodermapigmentosum syndrome as well as its consequences forthe subjects that suffer it, in other cases it is dedicated topresent sophisticated formulas to protect people from theultraviolet rays, there are very few references to the needsthat in the psychological, preventive and educational orderemanate from the so-called “infants of the moon”. Inorder to contribute to solving this problem, a project wasdeveloped to improve education for the prevention andcomprehensive educational care of children, adolescentsand young people of school age who suffer from this syndrome.This article presents the dimensions and indicatorsdefined in the research process to characterize the comprehensiveeducational care demanded by patients who,in different personal, family and social conditions, facethe challenge of living with this peculiar condition.