Into the Prodrome: Diagnosis, Disadvantage, and Biomedical Ambiguity

Within the field of neuroscience, a new illness stage called the “prodrome” is being characterized. The prodrome is a symptomatic period that precedes an official diagnosis. Huntington Disease (HD) is a neuropsychiatric disorder that has an extensively researched prodrome marked by psychiatric and cognitive symptoms. This paper provides a sociological investigation of the prodrome by analyzing 24 interviews with individuals with HD and 14 interviews with informal caregivers. I find that substantial disadvantages accompany the prodromal phase of HD, with the prodrome connected to: (1) inability to access healthcare, (2) inability to access health resources, (3) the depletion of personal resources, and (4) caregiver burden. Documentation of such disadvantages is important as prodromal phases are connected to a growing number of conditions. Study findings are discussed in relation to medicalization, as well as the tension between medical ambiguity and the organization of health institutions.