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Alexander's disease and the story of Louise.

Wilson, BA; Vargha-Khadem, F; Florschutz, G; (2018) Alexander's disease and the story of Louise. Neuropsychological Rehabilitation , 28 (2) pp. 199-207. 10.1080/09602011.2016.1222945. Green open access

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Abstract

We describe the rare condition known as Alexander's disease or Alexander's leukodystrophy, which is essentially a childhood dementia. We then present the case of Louise Davies (we are using Louise's real name with the permission and special request of her mother), a woman who was diagnosed with this disease at the age of 5 years and is still alive at the age of 38, making her the longest known survivor of this condition. Although now severely impaired, both physically and mentally, and able to do very little, she has lived far longer than expected. We present some neuropsychological results from her childhood before measuring her decline over the past four years. We conclude by considering whether or not the diagnosis was correct and why she has lived so long.

Type: Article
Title: Alexander's disease and the story of Louise.
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1080/09602011.2016.1222945
Publisher version: http://dx.doi.org/10.1080/09602011.2016.1222945
Language: English
Additional information: This is an Accepted Manuscript of an article published by Taylor & Francis in Neuropsychological Rehabilitation on 31 Aug 2016, available online: http://dx.doi.org/10.1080/09602011.2016.1222945.
Keywords: Alexander's disease, childhood dementia, leukodystrophy, neuropsychological assessment
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Developmental Neurosciences Dept
URI: https://discovery.ucl.ac.uk/id/eprint/1513405
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