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.
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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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