FAT-FREE, HIGH IN CALORIES. MANAGEMENT OF DIETS IN THE CASE OF A RARE METABOLIC DISORDER

• Main Author: Anna Chowaniec-Rylke
• Format: Article
• Language: English
• Published: Wydawnictwa AGH 2018-06-01
• Series: Studia Humanistyczne AGH
• Subjects: medical anthropology; rare disease; diet; agency; disability
• Online Access: http://journals.bg.agh.edu.pl/STUDIA/2018.17.2/human.2018.17.2.31.pdf

LCHADD is a rare metabolic disorder with a worldwide prevalence estimated at 1/250,000. However in Poland birth prevalence is predicted to be 1/120,000 and as high as 1/20,000 in the Pomeranian district. The bodies of LCHADD patients cannot produce the enzymes which are key in the process of fatty acid oxidation. That means that life-threatening episodes occur only when the body is “fasting”  – the calorie intake is lower than the body’s needs. There are no known cures or medications for LCHADD, but with proper treatment patients can improve and survive into adulthood. The treatment involves a strict diet, high in calories but fat-free. In this article I will sketch the dietary choices made by patients’ parents. Those findings will be established based on anthropological fieldwork conducted for over a year among those families. My intention is to show how decisions made by caregivers regarding an ill child’s diet can be interpreted in the broader context of consumer society, agency and a social model of disability