[cat] Una malaltia és considerada rara quan només afecta a un percentatge limitat de la
població, aquest tipus de malalties són generalment cròniques i degeneratives.
Conseqüentment la intervenció de pacients amb aquest tipus de malalties, és a vegades
desconcertant, ja que requereix d’una llarga investigació per poder determinar recursos
destinats a dites malalties.
Ens trobem davant un cas, el d’Aroa, una nina ingressada, prèviament a Son Dureta des
del seu naixement a causa d’una malaltia rara, i que a dia d’avui amb 14 anys continua a
l’hospital Son Espases. Aquesta malaltia, però no ha impedit que assisteixi a un centre
escolar ordinari des de ben petita, i a dies d’avui realitzi una escolarització compartida
entre l’Institut i un centre específic.
A través d’entrevistes realitzades a Aroa, a la seva família, i als professionals que
l’envolten des dels diferents centres i espais on es troba la nina, analitzem les demandes
que se’n deriven per poder aportar algun recurs per millorar les condicions de vida i el
benestar d’Aroa.
[eng] An illness is considered to be rare when it only affects a limited percentage of the
population. This type of illnesses are generally chronic and degenerative. For this
reason, the intervention in patients with these kinds of diseases is often confusing due to
the wide and exhaustive investigations carried out in order to determine the resources
destined to these illnesses.
In this essay, we have exposed Aroa's case. Aroa is a 14-year-old girl who has been in
hospital, previously in Son Dureta and currently in Son Espases, from her birth until
now due to a rare illness. Even so, her condition has not been an impediment for her to
go to school ever since she was a little girl and for her to attend both school and a
specific centre for children like her. Throughout different interviews to Aroa, her family and to professionals surrounding
the different centres and places where she goes, we have been able to analyze the
requests and issues that concern her illness in order to provide with some resources to
improve Aroa's life-style conditions and her well-being.