Well-being in students affected by rare diseases: a didactic proposal of inclusion

Abstract

Rare diseases (RD) or less frequent diseases affect at least 5 of 10.000 inhabitants. Due to the many disabling conditions, such as long lasting diagnostic procedures or the need of several medical treatments affecting some RD affected children in school age, they usually miss classes and need curricular adaptations. According to data from the INE, there might be 38.000 people RD affected in Navarre and 1300 disabled children, from which at least 372 children in school age could be RD affected. Schools should have the mechanisms to identify these students, as a great part would have special educational needs, derived in some cases of cognitive deficiencies, but in others, of absences forced by treatments and medical operations. Some of them also suffer from the ignorance and bullying of their peers, who scarcely understand their complicated daily routine accomplishment and the incomprehension of their teachers. The use of Cmap Tools software, together with a planned intervention based in Positive Psychology in each school from Navarre, attended by one or more RD affected child, is proposed in this article, for the creation of a Knowledge Model based on the specific RDs affecting children in Navarre. This way, a RD based Knowledge Model net could be built (regional, national and international), together with affected and non-affected students. The net would provide meaningful knowledge and could be useful for any school attended by other children suffering the same disease in Spain or other European countries, specifying the educational needs a child affected by that RD can have throughout the different educational levels. This could become a powerful international tool for normalizing RD and including affected students in the educational field, creating inclusive schools, and therefore spreading the knowledge to the social field.