The bladder extrophy and epispadias is a rare disease that affects 1 / 40,000 live births. Children present at birth a malformation of varying degrees of their in genitals with consequent problems of incontinence and genital organ dysfunction. The treatment of this condition is purely surgical and aims, in part, to achieve urinary continence in some cases, in a natural way. However most cases need to use intermittent catheterization. The second objective is to achieve an aesthetic and functional reconstruction of the external genital tract. In this context of informing and supporting those born with this rare condition the idea to create a story to be used in an educational context, came up. This is to educate on disability and rare diseases. It also represents a very useful means for going into schools where there are children with urogenital conditions, because this teaches the class about diversity. Through the story, and the use of drawings we want to tell a story about a person and not about the disease and to see the person first as an individual and only then the condition they have.

Luca’s sweater. A story about bladder extrophy

DI GRAZIA, MASSIMO
2015

Abstract

The bladder extrophy and epispadias is a rare disease that affects 1 / 40,000 live births. Children present at birth a malformation of varying degrees of their in genitals with consequent problems of incontinence and genital organ dysfunction. The treatment of this condition is purely surgical and aims, in part, to achieve urinary continence in some cases, in a natural way. However most cases need to use intermittent catheterization. The second objective is to achieve an aesthetic and functional reconstruction of the external genital tract. In this context of informing and supporting those born with this rare condition the idea to create a story to be used in an educational context, came up. This is to educate on disability and rare diseases. It also represents a very useful means for going into schools where there are children with urogenital conditions, because this teaches the class about diversity. Through the story, and the use of drawings we want to tell a story about a person and not about the disease and to see the person first as an individual and only then the condition they have.
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Utilizza questo identificativo per citare o creare un link a questo documento: http://hdl.handle.net/11368/2845938
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