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Huntington’s Disease: normalizing the extraordinary

Mara Tognetti
Mara Tognetti

by Mara Tognetti, Professor of Health Policy at Milan-Bicocca University, Italy

The research project “The community takes care of Huntington’s Disease” – piloted by the Observatory and Methods for Health at the Department of Sociology and Social Research of Milan-Bicocca University and directed by the present author – has conducted free interviews to learn about how health workers and relatives find the task of assisting people with Huntington’s Disease (HD). This is an incurable neuro-degenerative genetic complaint which sets in during the prime of the individual’s life cycle and puts paid to the social and physical existence of patient and family. It places social relations under enormous strain and completely disrupts family, working and social life.

For this reason, and because no kind of therapy yet exists to retard or halt progression, the challenge is both to search for an effective cure and to find ways, from the outset, of supporting those who shoulder the burden: the patient, the family and the health workers.

The research aimed to provide a picture of family needs and difficulties in looking after an HD sufferer. We particularly looked at how caregivers perceive their own requirement for time off for themselves, on the Continue reading Huntington’s Disease: normalizing the extraordinary