Object structure
Title:

Normalised Eating And Dietary Guidelines in LCHAD Deficiency

Subtitle:

Ethnologia Polona 40 (2019)

Creator:

Rajtar, Małgorzata

Publisher:

Institute of Archaeology and Ethnology Polish Academy of Sciences

Place of publishing:

Warsaw

Date issued/created:

2019

Description:

24 cm

Type of object:

Journal/Article

Subject and Keywords:

dietary guidelines ; standardisation ; food ; rare diseases. LCHADD ; Finland ; Poland

Abstract:

Dietary guidelines have become a ubiquitous feature of nutritional landscapes in a growing number of countries. Issued by departments or ministries of health and implemented by dietitians and health professionals, such guidelines are intended to govern the health of children and adults by regulating both the content and quantity of what they eat. While these dietary guidelines are intended for kids and adults who can and want to eat, they often serve as a reference point for the dietary treatment of patients whose appetites are considered abnormal, and/or who do not or cannot eat. Drawing from ethnographic research being carried out in Finland and Poland on LCHADD, a rare disease, this article juxtaposes dietary treatments prescribed for this disease with state and biomedical rationalities that govern “normal” dietary patterns and normalised eating. Treatment for LCHADD differs from general dietary recommendations for “normal” growing children. Despite stringent dietary guidelines for LCHADD, dietitians admit that there are no global standards in place regulating the consumption of prescribed nutrients; thus, recommendations may vary by country.

References:

Arizona Department of Health Services. n.d. Arizona’s Newborn Screening Panel. http://www.azdhs.gov/preparedness/state-laboratory/newborn-screening/index.php?utm_source=TWITTER&utm_medium=AZDHS&utm_campaign=Newborn%20Screening&utm_content=585776584&linkId=28880891#info-for-parents-disorder-info. Access: 03.08.2018.
Autti-Rämö I., Mäkelä M., Sintonen H., Koskinen H., Laajalahti L., Halila R., Kääriäinen H., Lapatto R., Näntö-Salonen K., Pulkki K., Renlund K., S a l o M., Ty n i T. 2005. Expanding screening for rare metabolic disease in the newborn: an analysis of costs, effect and ethical consequences for decision-making in Finland. Acta Paediatrica 94, 1126–1136.
Boni Z. 2018. “My mum feeds me, but really, I eat whatever I want!” A relational approach to feeding and eating. In V. Hartman, Cappellini B., Faircloth Ch. (eds.), Feeding Children Inside and Outside the Home. Critical Perspectives. Routledge, 107–123.
Council of the EU. 2009. Council recommendation of 8 June 2009 on an action in the field of rare diseases (2009/C151/02). http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:C:2009:151:0007:0010:EN:PDF. Access: 03.08.2018.
Coveney J. 2006. Food, morals and meaning. The pleasure and anxiety of eating. London, New York.
Dixon M., Stafford J., White F., Clayton N., Gallagher J. 2015. Disorders of mitochondrial energy metabolism, lipid metabolism and other disorders. In V. Shaw (ed.), Clinical paediatric dietetics. Chichester, UK, 588–636.
Dumit J. 2012. Drugs for life. How pharmaceutical companies define our health. Durham, London.
European Commission. n.d. Rare diseases. https://ec.europa.eu/health/non_communicable_diseases/rare_diseases_en. Access: 03.08.2018.
Fahnehjelm K. T., Liu Y., Olsson D., Amrén U., Haglind Ch. B., Holmström G., Halldin M., Andreasson S., Nordenström A. 2016. Most patients with Longchain 3-hydroxyacyl-CoA dehydrogenase deficiency develop pathological or subnormal retinal function. Acta Paedriatica 105, 1451–1460.
Featherstone K. and Atkinson P. 2012. Creating conditions. The making and remaking of a genetic condition. London, New York.
Foucault M. 1979. The will to knowledge: The history of sexuality. Vol. 1. London.
Foucault M. 2014. The politics of health in the eighteenth century. Foucault Studies 18, 113–127.
Greenhalgh S. 2012. Weighty subjects: the biopolitics of the U. S. war on fat. American Ethnologist 39 (3), 471–487.
Haglind Ch. B. 2016. Energy metabolism and clinical symptoms in beta-oxidation defects, especially Long-chain 3-hydroxyacyl-Coenzyme A dehydrogenase deficiency. PhD manuscript. Karolinska Institutet, Stockholm.
Heath D., Rapp R., Taussig K.-S. 2007. Genetic citizenship. In D. Nugent and J. Vincent (eds.), A companion to the anthropology of politics. Malden, MA, 152–167.
Immonen T. 2016. Long-chain 3-hydroxyacyl-CoA dehydrogenase deficiency in Finland – earlier diagnosis and strict diets improve the survival rate and clinical course. PhD manuscript. Helsinki University Hospital, University of Helsinki.
Kimura A. H., Biltekoff Ch., Mudry J., Hayes-Conroy J. 2014. Nutrition as project. Gastronomica. The Journal of Critical Food Studies 14 (3), 34–45.
Kramer M. S. and Kakuma R. 2001. The optimal duration of exclusive breastfeeding. A systematic review. Geneva: World Health Organization (WHO/NHD/01.08). http://www.who.int/nutrition/publications/optimal_duration_of_exc_bfeeding_review_eng.pdf. Access: 03.08.2018.
Kwaśniewska A. 2017. Choroba genetyczna jako klątwa. Analiza i kontekst dyskursu medialnego dotyczącego tzw. genu kaszubskiego [Genetic Disease as a Curse: An Analysis and Contextualization of the media Discourse in the “Kashubian Gene”]. LUD 101, 231–252.
Larotonda A. 2016. Experiencing rare diseases. In L. Manderson, E. Cartwright and A. Hardon (eds.), The Routledge Handbook of medical anthropology. New York, 26–31.
Libura M ., Władusiuk M., Małowicka M., Grabowska E., Gałązka-Sobotka M., Gryglewicz J. 2016. Choroby rzadkie w Polsce. Stan obecny i perspektywy. Warszawa.
Nordic Council of Ministers. 2014. Nordic nutrition recommendations 2012. Integrating nutrition and physical activity. Copenhagen. Available at: https://www.norden.org/en/theme/former-themes/themes-2016/nordic-nutrition-recommendation/nordic-nutrition-recommendations-2012. Access:03.08.2018.
Paul D. B. and Brosco J. P. 2013. The PKU paradox. A short history of genetic disease. Baltimore.
Piekutowska-Abramczuk D., Olsen R. K. J., Wierzba J., Popowska E., Jurkiewicz D., Ciara E., Ołtarzewski M., Gradowska W., Sykut-Cegielska J., Krajewska-Walasek M., Andresen B. S., Gregersen N., Pronicka E. 2010. A comprehensive HADHA c.1528G>C frequency study reveals high prevalence of Long-chain 3-hydroxyacyl-CoA dehydrogenase deficiency in Poland. Journal of Inherited Metabolic Disease 33 (Suppl. 3), S373–S377.
Rajtar M. 2017. On (nie)naturalności jedzenia. Pokarmy i technologie biomedyczne w chorobach metabolicznych [On the (Un)Naturalness of Eating: Foods and Biomedical Technologies in Metabolic Disorders]. LUD 101, 383–400.
Scholliers P. 2017. Norms and practices of children’s diets in Brussels hospitals, 1830–1914. The Journal of the History of Childhood and Youth 10 (3), 339–361.
Scrinis G. 2013. Nutritionism. The science and politics of dietary advice. New York.
Shaw V. (ed.) 2015. Clinical paediatric dietetics. Chichester, UK.
Shaw V. and Mc Carthy H. 2015. Nutritional assessment, dietary requirements, feed supplementation. In V. Shaw (ed.), Clinical paediatric dietetics. Chichester, UK, 3–22.
Solis J. O. and Singh R. H. 2002. Management of fatty acid oxidation disorders: a survey of current treatment strategies. Journal of the American Dietetic Association 102 (12), 1800–1806.
Sykut-Cegielska J. 2006. Mitochondrialne zaburzenia utleniania kwasów tłuszczowych. Badania kliniczne, biochemiczne i molekularne u polskich pacjentów [Mitochondrial fatty acid oxidation disorders: Clinical, biochemical and molecular tests on Polish patients]. Manuscript of postdoctoral dissertation. Warszawa.
Sykut-Cegielska J., Kowalik A. and Giżewska M. 2017. In H. Szajewska and A. Horvarth (eds.), Żywienie i leczenie żywieniowe dzieci i młodzieży. Cracow: Medycyna praktyczna, 264–286.
Szajewska H. 2017. Wprowadzanie pokarmów uzupełniających. In H. Szajewska and A. Horvarth (eds.), Żywienie i leczenie żywieniowe dzieci i młodzieży. Cracow: Medycyna praktyczna, 46–48.
Timmermans S. and Buchbinder M. 2013. Saving babies? The consequences of newborn genetic screening. Chicago.
Timmermans S. and Epstein S. 2010. A world of standards but not a standard world: towards a sociology of standards and standarization. Annual Review of Sociology 36, 69–89.
Tobiasz-Adamczyk B. (ed.) 2013. Od socjologii medycyny do socjologii żywienia. Cracow: Jagiellonian University Press.
Trainer S., Wutich A., Brewis A. 2017. Eating in the Panopticon: surveillance of food and weight before and after bariatric surgery. Medical Anthropology 36 (5), 500–514.
Weker H. and Barańska M. (eds.) 2014. Żywienie niemowląt i małych dzieci. Zasady postępowania w żywieniu zbiorowym [Nutrition of babies and small children. Dietary Guidelines]. Warszawa. http://www.imid.med.pl/images/do-pobrania/Zywienie_niemowlat_www.pdf. Access: 20.11.2017.
Yates-Doerr E. 2013. Complex carbohydrates: on the relevance of ethnography in nutrition education. In E-J. Abbots and A. Lavis (eds.), Why we eat, how we eat: contemporary encounters between foods and bodies. Farnham, 271–286.

Relation:

Ethnologia Polona

Volume:

40

Start page:

91

End page:

108

Resource type:

Text

Detailed Resource Type:

Article

Format:

application/octet-stream

Resource Identifier:

0137-4079 ; doi:10.23858/EthP40.2019.006

Source:

IAiE PAN, call no. P 366 ; IAiE PAN, call no. P 367 ; IAiE PAN, call no. P 368 ; click here to follow the link

Language:

eng

Rights:

Creative Commons Attribution BY-SA 3.0 PL license

Terms of use:

Copyright-protected material. [CC BY-SA 3.0 PL] May be used within the scope specified in Creative Commons Attribution BY-SA 3.0 PL license, full text available at: ; -

Digitizing institution:

Institute of Archaeology and Ethnology of the Polish Academy of Sciences

Original in:

Library of the Institute of Archaeology and Ethnology of the Polish Academy of Sciences

Projects co-financed by:

Operational Program Digital Poland, 2014-2020, Measure 2.3: Digital accessibility and usefulness of public sector information; funds from the European Regional Development Fund and national co-financing from the state budget. ; European Union. European Regional Development Fund

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