Journal article Open Access

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

Pérez-Chávez, Diana Estela; Llópiz-Guerra, Karel; Núñez Lira, Luis Alberto; Palacios Garay, Jessica Paola; Menacho Vargas, Isabel; Hernández, Ronald M.

Abstract

Aconsiderable part of the bibliography at present refers to the clinicalgenetic description of the Xeroderma pigmentosum syndrome as well as its consequences for the subjects that suffer it, in other cases it is dedicated to present sophisticated formulas to protect people from the ultraviolet rays, there are very few references to the needs that in the psychological, preventive and educational order emanate from the so-called “infants of the moon”. In order to contribute to solving this problem, a project was developed to improve education for the prevention and comprehensive educational care of children, adolescents and young people of school age who suffer from this syndrome. This article presents the dimensions and indicators defined in the research process to characterize the comprehensive educational care demanded by patients who, in different personal, family and social conditions, face the challenge of living with this peculiar condition

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