El síndrome xeroderma pigmentosa: Una experiencia de atención integral a los niños con necesidades especiales en Cuba

Translated title of the contribution: The xeroderma pigmentosum syndrome: An experience of integral attention to children with special needs in Cuba

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

Research output: Contribution to journalArticlepeer-review

Abstract

A considerable part of the bibliogra-phy at present refers to the clinical-genetic 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 syn-drome. 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.

Translated title of the contributionThe xeroderma pigmentosum syndrome: An experience of integral attention to children with special needs in Cuba
Original languageSpanish
Pages (from-to)106-111
Number of pages6
JournalRevista Latinoamericana de Hipertension
Volume15
Issue number2
StatePublished - 2020
Externally publishedYes

Bibliographical note

Publisher Copyright:
© 2020, Venezuelan Society of Pharmacology and Clinical and Therapeutic Pharmacology. All rights reserved.

Copyright:
Copyright 2020 Elsevier B.V., All rights reserved.

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