Normalised Eating And Dietary Guidelines in LCHAD Deficiency
Keywords:
dietary guidelines, standardisation, food, rare diseases, LCHADD, Finland, PolandAbstract
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.
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References
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R a j t a r 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.
S c h o l l i e r s 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.
S c r i n i s G. 2013. Nutritionism. The science and politics of dietary advice. New York.
S h a w V. (ed.) 2015. Clinical paediatric dietetics. Chichester, UK.
S h a w V. and Mc C a r t h y H. 2015. Nutritional assessment, dietary requirements, feed supplementation. In V. Shaw (ed.), Clinical paediatric dietetics. Chichester, UK, 3–22.
S o l i s J. O. and S i n g h 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.
S y k u t - C e g i e l s k a 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.
S y k u t - C e g i e l s k a J., K o w a l i k A. and G i ż e w s k a M. 2017. In H. Szajewska and A. Horvarth (eds.), Żywienie i leczenie żywieniowe dzieci i młodzieży. Cracow: Medycyna praktyczna, 264–286.
S z a j e w s k a H. 2017. Wprowadzanie pokarmów uzupełniających. In H. Szajewska and A. Horvarth (eds.), Żywienie i leczenie żywieniowe dzieci i młodzieży. Cracow: Medycyna praktyczna, 46–48.
T i m m e r m a n s S. and B u c h b i n d e r M. 2013. Saving babies? The consequences of newborn genetic screening. Chicago.
T i m m e r m a n s S. and E p s t e i n 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.
T o b i a s z - A d a m c z y k B. (ed.) 2013. Od socjologii medycyny do socjologii żywienia. Cracow: Jagiellonian University Press.
T r a i n e r S., Wu t i c h A., B r e w i s A. 2017. Eating in the Panopticon: surveillance of food and weight before and after bariatric surgery. Medical Anthropology 36 (5), 500–514.
W e k e r H. and B a r a ń s k a 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.
Y a t e s - Do e r r 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.
=28880891#info-for-parents-disorder-info. Access: 03.08.2018.
A u t t i - R ä m ö I ., Mä k e l ä M., S i n t o n e n H., Ko s k i n e n H., L a a j a l a h t i L., Ha l i l a R., K ä ä r i ä i n e n H., L a p a t t o R., Nä n t ö - S a l o n e n K., P u l k k i K., R e n l u n d 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.
B o n i 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.
C o v e n e y J. 2006. Food, morals and meaning. The pleasure and anxiety of eating. London, New York.
Di x o n M., S t a f f o r d J., Wh i t e F., C l a y t o n N., G a l l a g h e r J. 2015. Disorders of mitochondrial energy metabolism, lipid metabolism and other disorders. In V. Shaw (ed.), Clinical paediatric dietetics. Chichester, UK, 588–636.
Du m i t 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.
F a h n e h j e lm K. T., L i u Y., O l s s o n D., Amr é n U., H a g l i n d Ch. B., H o lms t r öm G.,
H a l l d i n M., A n d r e a s s o n S., N o r d e n s t r ö m A. 2016. Most patients with Longchain 3-hydroxyacyl-CoA dehydrogenase deficiency develop pathological or subnormal retinal function. Acta Paedriatica 105, 1451–1460.
F e a t h e r s t o n e K. and A t k i n s o n P. 2012. Creating conditions. The making and remaking of a genetic condition. London, New York.
F o u c a u l t M. 1979. The will to knowledge: The history of sexuality. Vol. 1. London.
F o u c a u l t M. 2014. The politics of health in the eighteenth century. Foucault Studies 18, 113–127.
G r e e n h a l g h S. 2012. Weighty subjects: the biopolitics of the U. S. war on fat. American Ethnologist 39 (3), 471–487.
H a g l i n d 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.
H e a t h D., R a p p R., Ta u s s i g K.-S. 2007. Genetic citizenship. In D. Nugent and J. Vincent (eds.), A companion to the anthropology of politics. Malden, MA, 152–167.
I m m o n e n 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.
K i m u r a A. H., B i l t e k o f f Ch., M u d r y J., H a y e s - C o n r o y J. 2014. Nutrition as project. Gastronomica. The Journal of Critical Food Studies 14 (3), 34–45.
K r a m e r M. S. and K a k u m a 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.
K w a ś n i e w s k a 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.
L a r o t o n d a A. 2016. Experiencing rare diseases. In L. Manderson, E. Cartwright and A. Hardon (eds.), The Routledge Handbook of medical anthropology. New York, 26–31.
L i b u r a M ., W ł a d u s i u k M., Ma ł ow i c k a M., Gr a b o w s k a E., G a ł ą z k a - S o b o t k a M., Gr y g l e w i c z 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.
P a u l D. B. and B r o s c o J. P. 2013. The PKU paradox. A short history of genetic disease. Baltimore.
P i e k u t o w s k a -Ab r a m c z u k D., Ol s e n R. K. J., Wi e r z b a J., Po p o w s k a E., J u r k i e w i c z D., C i a r a E., O ł t a r z e w s k i M., G r a d o w s k a W., S y k u t - C e g i e l s k a J., K r a j e w s k a-Wa l a s e k M., A n d r e s e n B. S., Gr e g e r s e n N., P r o n i c k a 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.
R a j t a r 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.
S c h o l l i e r s 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.
S c r i n i s G. 2013. Nutritionism. The science and politics of dietary advice. New York.
S h a w V. (ed.) 2015. Clinical paediatric dietetics. Chichester, UK.
S h a w V. and Mc C a r t h y H. 2015. Nutritional assessment, dietary requirements, feed supplementation. In V. Shaw (ed.), Clinical paediatric dietetics. Chichester, UK, 3–22.
S o l i s J. O. and S i n g h 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.
S y k u t - C e g i e l s k a 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.
S y k u t - C e g i e l s k a J., K o w a l i k A. and G i ż e w s k a M. 2017. In H. Szajewska and A. Horvarth (eds.), Żywienie i leczenie żywieniowe dzieci i młodzieży. Cracow: Medycyna praktyczna, 264–286.
S z a j e w s k a H. 2017. Wprowadzanie pokarmów uzupełniających. In H. Szajewska and A. Horvarth (eds.), Żywienie i leczenie żywieniowe dzieci i młodzieży. Cracow: Medycyna praktyczna, 46–48.
T i m m e r m a n s S. and B u c h b i n d e r M. 2013. Saving babies? The consequences of newborn genetic screening. Chicago.
T i m m e r m a n s S. and E p s t e i n 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.
T o b i a s z - A d a m c z y k B. (ed.) 2013. Od socjologii medycyny do socjologii żywienia. Cracow: Jagiellonian University Press.
T r a i n e r S., Wu t i c h A., B r e w i s A. 2017. Eating in the Panopticon: surveillance of food and weight before and after bariatric surgery. Medical Anthropology 36 (5), 500–514.
W e k e r H. and B a r a ń s k a 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.
Y a t e s - Do e r r 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.
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Published
2019-12-15
How to Cite
Rajtar, M. (2019). Normalised Eating And Dietary Guidelines in LCHAD Deficiency. Ethnologia Polona, 40, 91–107. Retrieved from https://journals.iaepan.pl/ethp/article/view/26
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