Malgorzata Rajtar

The proposed project is situated at the intersection of social and medical anthropology, food studies, and bioethics. Drawing from ongoing ethnographic research in Poland and Finland, it aims at (i) analyzing issues that encompass the consumption of food, new biomedical technologies, and practices of care in the lived experience of patients with rare metabolic disorders, specifically LCHAD deficiency, their families, patient advocacy organizations, and doctors, and (ii) writing up the results of this study in a book monograph tentatively titled “Food, Biomedical Technologies, and Care. The Case of Rare Metabolic Disorders.” In particular, it examines how the necessity to frequently eat (a limited range of) foodstuffs while simultaneously people with metabolic disorders, such as LCHAD deficiency cannot or would not eat and thus rely on feeding tubes illuminates not only the ways in which food and biomedical technologies are intertwined, but also alters our understanding of eating as a “natural” process. In doing so, this project goes beyond commonly examined associations such as care and the elderly, food and obesity, and finally biomedical technologies and life/death. Moreover, by focusing on the Baltic region, it will contribute to a slowly growing literature on rare diseases by providing the first anthropological insight into rare metabolic disorders in this region.

Rare diseases (RDs) make up a large group of diseases (7,000-8,000) that are characterized by a low prevalence in populations (≤5: 10,000 in Europe) Since RDs are often severe, chronic, disabling, and possibly lethal conditions, they not only decrease patients’ (and their families’) quality of life, but also pose a challenge for public healthcare. It is estimated that about 30 million European Union citizens are affected by rare diseases. Social science scholarship on rare disorders is still underdeveloped and often addresses patient advocacy groups in the U.S., and newborn genetic screening. However, despite the importance of dietary regimen and diet in many rare diseases, this scholarship has devoted little attention to these issues.

LCHAD (Long-Chain 3-Hydroxyacyl-CoA Dehydrogenase) deficiency (LCHADD) seems to be extremely rare in Australia and Northern America; it is, however, relatively frequent in Europe, around the Baltic Sea in particular. The research project focuses on Poland and Finland, which probably show the highest number of LCHADD patients worldwide. Similar to other metabolic disorders, the treatment of LCHADD is primarily based on a special diet that consists of low-fat and high-carbohydrate foods. Due to dietary recommendations, patients with LCHADD are often perceived to have an “attitude towards eating” that is far from “normal.” They either eat too often or do not eat at all and hence have to rely on feeding tubes. LCHADD is one of about 200 medical conditions that can require tube feeding in children listed by the Feeding Tube Awareness Foundation.