POSIŁEK CO DWIE GODZINY, CZYLI O RELACJACH RODZINNYCH, „ZARZĄDZANIU” DIETĄ I DEFINICJACH NIEPEŁNOSPRAWNOŚCI W PRZYPADKU RZADKIEJ CHOROBY METABOLICZNEJ

Anna CHOWANIEC-RYLKE

Published: 2018-12-31

Vol. 62 (2018)

SEVEN MEALS A DAY. FAMILY RELATIONS, DISEASE MANAGMENT AND DEFINITIONS OF DISABILITY IN CASE OF RARE METABOLIC DISORDER

Anna CHOWANIEC-RYLKE

Abstract

LCHAD deficiency is a rare metabolic disorder. Patients’ bodies cannot produce an enzyme necessary in breaking fatty acids which makes it impossible to produce energy from that source, leaving glucose as the only fuel for the body. There is no known cure or medicine for LCHADD, but with proper care – strict fat-free, high-calorie diet – patients can survive and thrive. The dietary requirements are becoming the central issue in lives of the families with LCHADD child. Drawing from more than a twoyear-long ethnographic fieldwork among Polish families struggling with this disease I argue, that strict diet influences family relations, and food becomes a lens through which gender roles, social definitions of disability and family dynamics can be seen.

Keywords:

Medical anthropology, Food studies, rare diseases, genetic disorders, disability, gender

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CHOWANIEC-RYLKE, A. (2018). SEVEN MEALS A DAY. FAMILY RELATIONS, DISEASE MANAGMENT AND DEFINITIONS OF DISABILITY IN CASE OF RARE METABOLIC DISORDER. Etnografia Polska, 62, 163–82. Retrieved from https://journals.iaepan.pl/ep/article/view/136

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