Paper short abstract:

Drawing from ongoing ethnographic research in Finland and Poland, this paper attends to living experiences of patients with LCHADD and their caregivers at the intersections of food regimes, the body, and technologies.

Paper long abstract:

LCHADD (Long-Chain 3-Hydroxyacyl-CoA Dehydrogenase deficiency) is a rare, albeit life-threatening metabolic disorder. There currently are no drugs available that would "cure" patients with LCHADD. Treatment itself is clinically challenging and it subjects patients to a dietary regimen for the rest of their lives; it entails a low-fat and high-carbohydrate diet as well as avoiding long periods of fasting and physical exertion. Feeding problems that occur in children and adolescents with LCHADD often necessitate tube feeding. Finland and Poland probably show the highest number of patients with LCHADD worldwide. Drawing from ongoing ethnographic research in these two countries, this paper attends to living experiences of patients with LCHADD and their caregivers at the intersections of food regimes, the body, and technologies. In particular, it focuses on three foci. First, it examines patients and their caregivers' appropriation and translation of apparently standard dietary regulations into daily lives as exemplified by, for instance, the usage of syringes to measure the exact amount of certain foods to be consumed. Second, it attends to the process of learning how and when to feed the body so as to avoid adverse symptoms (e.g. muscle pain, hypoglycemia). Third, it analyzes tube feeding practices in these two countries as sites and materialities through which biopolicies towards patients (often children) with feeding problems are highlighted.