La malattia 'dentro'. Linguaggi e rappresentazioni del corpo nella Malattia di Huntington

Identifier:  TDX:3960

Handle: https://hdl.handle.net/20.500.11797/TDX3960

Authors:  Castagna, Nicoletta

Abstract:
This research aims to explore the dynamics posed by the experience of family caregivers of patients and individuals at genetic risk for Huntington's disease. By analysing family caregivers' accounts of their experience of illness, I set out to identify critical issues in family management of the patient, in their relationships with experts and in the reworking of scientific knowledge. During self-help groups and interviews with patients' relatives, the uncertainties of an incurable and somewhat unpredictable disease, which is still little known and subject to stigmatisation processes affecting not only the patient but also his or her family, emerged. Being a genetic disease, its shadow is cast over the heirs of the sufferer through the processes of surveillance and self-surveillance. The narratives of the disease are thus intertwined with the genetic suffering of those at risk. Control of the body is thus linked to the ethics of responsibility for one's own health and the well-being of family members. DNA testing thus seems to be a means of planning the future and getting to know oneself. In art therapy groups for people at risk, this 'gift of knowing', provided by genetic technologies, carries with it a power that is not only cognitive but also transformative for the individual and his or her family and relational environment. The perception of genetic risk is presented as a phenomenon that changes over time and is conditioned by the ethics of responsibility, which is intensified in certain significant circumstances. It thus becomes clear how this illness is localised in the body, both latently, through a threatening gene, and in the form of a web of emotions and experiences dictated by the uncertainty of an unpredictable body.