Análisis del itinerario escolar de una persona con una enfermedad rara: Aciduria Glutárica Tipo 1

Abstract

[eng] Glutaric Aciduria type 1 (GA1) is a rare, metabolic and hereditary disease caused by a defi ciency of the enzyme Glutaryl-CoA dehydrogenase (GCDH). We analyze of the educational experience of a person with GA1 through a questionnaire, in-depth interviews and fi eld notes. With the help of medical reports, school documents, videos and photographs, we have been able to reconstruct in the most faithful way this experience that occurs between the ages from 3 to 12. The purpose of this essay is the analysis of the aspects that marked the academic trajectory during their educational period in an ordinary center, focusing on their schooling process, limitations and diffi culties, educational inclusion, resources and adaptations. Through this study we have been able to understand the importance of recognizing the needs of each person besides their diagnosis and to verify that, by an interdisciplinary approach, limitations can be resolved and educational inclusion addressed.