脊髄小脳変性症—『1リットルの涙』

Spinocerebellar Degeneration: One Liter of Tears

この作品は脊髄小脳変性症と診断された少女の闘病日記を映画化したものである。13歳で起立・歩行のふらつきで発症し，高校に入学するが，2年生で養護学校に転校した。在宅療養を経て入院療養生活に至る。病の進行が人生の夢を次々と奪っていく。しかし家族，友人，医療関係者の支援のもとに自らの人生を精一杯生きる様が描かれている。難治性進行性疾患における医師と患者の関わり方について考えさせる作品である。

Abstract

This movie, based on the diary of a girl affected with juvenile onset of spinocerebellar ataxia, begins at the age of 13, when she first showed unstable gait. Despite support from families and friends, the progressive disability incapacitated her senior high school study, causing her to move to another school for the physically handicapped. In her hospitalized life at the medical institute, she continued to keep diary in her bed-fast state. The several film scenes detail the disorder's effects on her daily activity and her fight against it. Her life and diary notes tell us to consider what, when, and how to be inclusive in supporting patients with progressive ataxic disorder.