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Updated: Nov 22, 2025

ALS - Motor Neuron Disease: Mechanism and Development of New Therapies
Published on: July 29, 2007
Living with motor neurone disease: an insider's sociological perspective
Kirsten Harley1, Karen Willis2
1Faculty of Medicine and Health, University of Sydney, Sydney, Australia.
Abstract:
This article is a discussion between two former colleagues and longstanding friends about the lived experience of illness and disability. In January 2013, Kirsten Harley, a promising early career sociologist was diagnosed with motor neurone disease (MND), a degenerative neurological condition with a typical life expectancy of 2-3 years. In this article, which is part interview and part shared reflection, we consider how Kirsten's knowledge of sociology has shaped her responses to the illness. We 'discuss' the process of meaning making, health system navigation, interactions with health professionals, advocacy, becoming a 'passive activist', the role of technology and what we, as sociologists, might learn from a life so dramatically changed.
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