Keywords
Medical anthropology
Food studies
rare diseases
genetic disorders
disability
gender
Food studies
rare diseases
genetic disorders
disability
gender
How to Cite
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(1-2), 163–82. Retrieved from https://journals.iaepan.pl/ep/article/view/136
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.
References
Barnes Colin, Mercer Geof 2008, Niepełnosprawność, tłum. P. Morawski, Wydawnictwo Sic!, Warszawa
Bodenheimer Thomas, Lorig Kate, Holman Halsted, Grumbach Kevin 2002, Patient self-managment of chronic disease in primary care. JAMA, nr 288 (19), s. 2469–2475
Care Continuum Alliance Definition of Disease Management, http://www.carecontinuum.org/dm_definition.asp, dostęp: 28.02.2019
Chowaniec-Rylke Anna 2016, Choroby rzadkie – perspektywa antropologiczna, [w:] E. Nowina--Sroczyńska, S. Latocha, T. Siemiński (red.), Oblicza choroby w czasach płynnej nowoczesności, Muzeum Zachodniokaszubskie w Bytowie, Bytów – Łódź, s. 111–128
Counihan Carole 1999, The Anthropology of food and body. Gender, meaning and power, Routledge, New York – London
Dilger Hansjörg, Leissner Linn i in. 2013, Illness perception and clinical treatment expe¬riences in patients with M. Maroteaux-Lamy, mucopolysaccharidosis type VI, and a Turkish migration background in Germany, PLOS ONE, nr 8 (6), s. 1–11
Fiese Barbara, Foley Kimberly, Spagnola Mary 2006, Routine and ritual elements in family mealtimes: Contexts for child wellbeing and family identity, New Directions in Child and Adolescent Development, Special Issue: Family Mealtime as a Context of Development and Socialization, nr 111, s. 67–90
Goffman Erving 2007, Piętno: rozważania o zranionej tożsamości, tłum. A. Dzierżyńska, J. Tokarska-Bakir, Gdańskie Wydawnictwo Psychologiczne, Gdańsk
Hall Alice 2016, Literature and disability, Routledge, London, New York
Haukanes Haldis 2007, Sharing food, sharing taste? Consumption practises, gender relations and individuality in Czech families, Anthropology of Food Journal, December, https://journals.openedition.org/aof/1912, dostęp 06.02.2019
Helman Cecil, Greenhalgh Trisha 2000, Food beliefs and practices among British Bangladeshis with diabetes: Implications for health education, Anthropology & Medicine, vol. 2, nr 7, s. 209–226
Kubicki Paweł 2015, Rodzice dzieci z niepełnosprawnością. Analiza polityk publicznych we współczesnej Polsce, [w:] R. Hryciuk, E. Korolczuk (red.), Niebezpieczne związki. Macierzyństwo, ojcostwo i polityka, Wydawnictwa Uniwersytetu Warszawskiego, Warszawa, s. 133–158
Lasker Judith, Sogolow Ellen i in. 2005, The role of an online community for people with a rare disease: content analysis of messages posted on a primary biliary cirrhosis mailin¬glist, Journal of Medical Internet Research, nr 7 (1), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1550634/, dostęp 06.02.2019
Lightman Ernie, Vick, Andrea i in. 2009, “Not disabled enough”: Episodic disabilities and the Ontario Disability Support Program, Disability Studies Quarterly, vol. 29, nr 3, http://www.dsq-sds.org/article/view/932/1108, dostęp 06.02.2019
Marcenko Maureen, Meyers Judith 1991, Mothers of children with developmental disabilities: who shares the burden?, Family Relations, nr 40, s. 186–190
Montoya Michael 2007, Bioethnic conscription: genes, race, and mexicana/o ethnicity in diabetes research, Cultural Anthropology, vol. 1 (22), s. 94–128
O’Brien Kelly, Davies, Aileen i in. 2009, Putting episodic disability into context: a qualitative study exploring factors that influence disability experienced by adults living with HIV/AIDS, Journal of the International AIDS Society, nr 12 (1), s. 1–11
Pihko Helena, Tyni Tiina, 1999, Long-chain 3-hydroxyacyl-CoA dehydrogenase deficiency, Acta Paediatrica, nr 88, s. 237–245
Pokrzywa Magdalena 2016, Role kobiet i mężczyzn w rodzinach korzystających z pomocy społecznej w ograniczaniu ubóstwa, Annales Universitatis Mariae Curie-Skłodowska, t. 41, 2, s. 123–137
Rajtar Małgorzata 2017, O (nie)naturalności jedzenia. Pokarmy i technologie biomedyczne w chorobach metabolicznych, Lud, t. 101, s. 383–400
Rodwell Charlotte, Aymé Segolene, 2014, Report on the state of the art of rare disease activities in Europe – Poland, http://www.eucerd.eu/upload/file/Reports/2014ReportStateofArtRDActivitiesPL.pdf, dostęp 06.02.2019
Schrijvers Guus 2009, Disease managment: a proposal for new definition, International Journal of Integrated Care, vol. 9, s. 1–3
Sykut-Cegielska Jolanta, 2006, Mitochondrialne zaburzenia utleniania kwasów tłuszczowych. Badania kliniczne, biochemiczne i molekularne u polskich pacjentów, Biuro Gamma Bogusław Osuchowski, Warszawa
Sykut-Cegielska Jolanta i in., 2011, Urgent metabolic service improves survival in long-chain 3-hydroxyacyl-CoA dehydrogenase, LCHAD, deficiency detected by symptomatic identification and pilot newborn screening, Inherit Metabolic Diseases Journal, t. 34, s. 185–195
Titkov Anna 2007, Tożsamośc polskich kobiet. Ciągłość, zmiana, konteksty, IFiS PAN, Warszawa
Webster Michelle, Gabe Jonathan 2016, Diet and identity: Being a good parent in the face of contradictions presented by the ketogenic diet, Sociology of Health and Illness, nr 38(3), s. 123–136
Wiedman Dennis 2012, Native American embodiment of the chronicities of modernity. Reservation food, diabetes, and the metabolic syndrome among the Kiowa, Comanche, and Apache, Medical Anthropology Quarterly, vol. 4(26), s. 595–612
Wilk Richard 2010, Power at the table: Food fights and happy meals, Cultural Studies – Critical Methodologies, vol. 10, nr 6, s. 428–436
Zdrojewska-Żywiecka Anna 2012, Terror laktacyjny versus nagonka butelkowa. O konfliktach między kobietami w zakresie praktyk macierzyństwa, [w:] R. Hryciuk, E. Korolczuk (red.), Pożegnanie z Matką Polką? Dyskursy, praktyki i reprezentacje macierzyństwa we współczesnej Polsce, Wydawnictwa Uniwersytetu Warszawskiego, Warszawa, s. 125–146
Bodenheimer Thomas, Lorig Kate, Holman Halsted, Grumbach Kevin 2002, Patient self-managment of chronic disease in primary care. JAMA, nr 288 (19), s. 2469–2475
Care Continuum Alliance Definition of Disease Management, http://www.carecontinuum.org/dm_definition.asp, dostęp: 28.02.2019
Chowaniec-Rylke Anna 2016, Choroby rzadkie – perspektywa antropologiczna, [w:] E. Nowina--Sroczyńska, S. Latocha, T. Siemiński (red.), Oblicza choroby w czasach płynnej nowoczesności, Muzeum Zachodniokaszubskie w Bytowie, Bytów – Łódź, s. 111–128
Counihan Carole 1999, The Anthropology of food and body. Gender, meaning and power, Routledge, New York – London
Dilger Hansjörg, Leissner Linn i in. 2013, Illness perception and clinical treatment expe¬riences in patients with M. Maroteaux-Lamy, mucopolysaccharidosis type VI, and a Turkish migration background in Germany, PLOS ONE, nr 8 (6), s. 1–11
Fiese Barbara, Foley Kimberly, Spagnola Mary 2006, Routine and ritual elements in family mealtimes: Contexts for child wellbeing and family identity, New Directions in Child and Adolescent Development, Special Issue: Family Mealtime as a Context of Development and Socialization, nr 111, s. 67–90
Goffman Erving 2007, Piętno: rozważania o zranionej tożsamości, tłum. A. Dzierżyńska, J. Tokarska-Bakir, Gdańskie Wydawnictwo Psychologiczne, Gdańsk
Hall Alice 2016, Literature and disability, Routledge, London, New York
Haukanes Haldis 2007, Sharing food, sharing taste? Consumption practises, gender relations and individuality in Czech families, Anthropology of Food Journal, December, https://journals.openedition.org/aof/1912, dostęp 06.02.2019
Helman Cecil, Greenhalgh Trisha 2000, Food beliefs and practices among British Bangladeshis with diabetes: Implications for health education, Anthropology & Medicine, vol. 2, nr 7, s. 209–226
Kubicki Paweł 2015, Rodzice dzieci z niepełnosprawnością. Analiza polityk publicznych we współczesnej Polsce, [w:] R. Hryciuk, E. Korolczuk (red.), Niebezpieczne związki. Macierzyństwo, ojcostwo i polityka, Wydawnictwa Uniwersytetu Warszawskiego, Warszawa, s. 133–158
Lasker Judith, Sogolow Ellen i in. 2005, The role of an online community for people with a rare disease: content analysis of messages posted on a primary biliary cirrhosis mailin¬glist, Journal of Medical Internet Research, nr 7 (1), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1550634/, dostęp 06.02.2019
Lightman Ernie, Vick, Andrea i in. 2009, “Not disabled enough”: Episodic disabilities and the Ontario Disability Support Program, Disability Studies Quarterly, vol. 29, nr 3, http://www.dsq-sds.org/article/view/932/1108, dostęp 06.02.2019
Marcenko Maureen, Meyers Judith 1991, Mothers of children with developmental disabilities: who shares the burden?, Family Relations, nr 40, s. 186–190
Montoya Michael 2007, Bioethnic conscription: genes, race, and mexicana/o ethnicity in diabetes research, Cultural Anthropology, vol. 1 (22), s. 94–128
O’Brien Kelly, Davies, Aileen i in. 2009, Putting episodic disability into context: a qualitative study exploring factors that influence disability experienced by adults living with HIV/AIDS, Journal of the International AIDS Society, nr 12 (1), s. 1–11
Pihko Helena, Tyni Tiina, 1999, Long-chain 3-hydroxyacyl-CoA dehydrogenase deficiency, Acta Paediatrica, nr 88, s. 237–245
Pokrzywa Magdalena 2016, Role kobiet i mężczyzn w rodzinach korzystających z pomocy społecznej w ograniczaniu ubóstwa, Annales Universitatis Mariae Curie-Skłodowska, t. 41, 2, s. 123–137
Rajtar Małgorzata 2017, O (nie)naturalności jedzenia. Pokarmy i technologie biomedyczne w chorobach metabolicznych, Lud, t. 101, s. 383–400
Rodwell Charlotte, Aymé Segolene, 2014, Report on the state of the art of rare disease activities in Europe – Poland, http://www.eucerd.eu/upload/file/Reports/2014ReportStateofArtRDActivitiesPL.pdf, dostęp 06.02.2019
Schrijvers Guus 2009, Disease managment: a proposal for new definition, International Journal of Integrated Care, vol. 9, s. 1–3
Sykut-Cegielska Jolanta, 2006, Mitochondrialne zaburzenia utleniania kwasów tłuszczowych. Badania kliniczne, biochemiczne i molekularne u polskich pacjentów, Biuro Gamma Bogusław Osuchowski, Warszawa
Sykut-Cegielska Jolanta i in., 2011, Urgent metabolic service improves survival in long-chain 3-hydroxyacyl-CoA dehydrogenase, LCHAD, deficiency detected by symptomatic identification and pilot newborn screening, Inherit Metabolic Diseases Journal, t. 34, s. 185–195
Titkov Anna 2007, Tożsamośc polskich kobiet. Ciągłość, zmiana, konteksty, IFiS PAN, Warszawa
Webster Michelle, Gabe Jonathan 2016, Diet and identity: Being a good parent in the face of contradictions presented by the ketogenic diet, Sociology of Health and Illness, nr 38(3), s. 123–136
Wiedman Dennis 2012, Native American embodiment of the chronicities of modernity. Reservation food, diabetes, and the metabolic syndrome among the Kiowa, Comanche, and Apache, Medical Anthropology Quarterly, vol. 4(26), s. 595–612
Wilk Richard 2010, Power at the table: Food fights and happy meals, Cultural Studies – Critical Methodologies, vol. 10, nr 6, s. 428–436
Zdrojewska-Żywiecka Anna 2012, Terror laktacyjny versus nagonka butelkowa. O konfliktach między kobietami w zakresie praktyk macierzyństwa, [w:] R. Hryciuk, E. Korolczuk (red.), Pożegnanie z Matką Polką? Dyskursy, praktyki i reprezentacje macierzyństwa we współczesnej Polsce, Wydawnictwa Uniwersytetu Warszawskiego, Warszawa, s. 125–146