Results found: 2

Search results

Sort By:

Limit search:

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

100%

Chowaniec-Rylke A.

Studia Humanistyczne AGH

2018

vol. 17

issue 2

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.

Rehabilitacja dzieci z zespołem Downa – doświadczenia rodziców

100%

Chowaniec-Rylke A.

Barbarzyńca. Pismo Antropologiczne

2018

issue 23

102-117

This article aims at discussing experiences of parents whose child was diagnosed with Down syndrome. It is based on a two-year fieldwork research in large cities in Poland that included in-depth interviews with families and discourse analysis of Internet sources. Down syndrome is one of the most common genetic disorders, caused by the presence of a third copy of chromosome 21. Due to genetic nature of the disorder, there is no known cure for DS. Low muscle tone and mental impairment are one of the most common symptoms. In this article I examine the role of the physiotherapy in lives of DS children parents. Their children may never be fully functioning intellectually, but in most cases their physical development, however delayed, will be successful. I argue that the mother dedication in finding new methods of improving their children physical abilities may be seen as a way of regaining agency and acceptance.

Refine search results

1 Barbarzyńca. Pismo Antropologiczne

1 Studia Humanistyczne AGH

2 Chowaniec-Rylke A.

2 2018

Search results

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

Rehabilitacja dzieci z zespołem Downa – doświadczenia rodziców