Entanglements of rare diseases in the Baltic Sea Region:
"Drawing on ethnographic studies of the lived experiences of people with rare diseases, this volume critically examines rare, chronic diseases in the context of care, kinship, and technologies, providing in-depth analyses of local worlds that usually remain at the peripheries of medical anthrop...
Gespeichert in:
| Weitere Verfasser: | , |
|---|---|
| Format: | Buch |
| Sprache: | English |
| Veröffentlicht: |
Lanham, Maryland ; Boluder ; New York ; London
Lexington Books
[2024]
|
| Schriftenreihe: | Anthropology of well-being : Individual, community, society
|
| Schlagworte: | |
| Online-Zugang: | Inhaltsverzeichnis Register // Gemischte Register |
| Zusammenfassung: | "Drawing on ethnographic studies of the lived experiences of people with rare diseases, this volume critically examines rare, chronic diseases in the context of care, kinship, and technologies, providing in-depth analyses of local worlds that usually remain at the peripheries of medical anthropological inquiry"-- |
| Beschreibung: | x, 213 Seiten Illustrationen, Diagramme 24 cm |
| ISBN: | 9781666942385 |
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Datensatz im Suchindex
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Contents List of Tables and Figures vii ix Acknowledgments Introduction Malgorzata Rajtar and Katarzyna E. Krol Chapter 1 : Matriarchal Management, Expert Caregiving, and Intensive Mothering among Mothers of Children with Phenylketonuria Anna Chowaniec Chapter 2: Between Paternalism and Autonomy: Polish and Swedish Configurations of Caring for Children with Inherited Metabolic Disease Filip Rogalski 1 21 47 Chapter 3: Food as Medicine: Culinary Workshops for Patients with Rare Inborn Errors of Metabolism from Anthropological and Dietary Perspectives 67 Katarzyna E. Krol and Ewa Ehmke vel Emczynska-Seliga Chapter 4: Between Standard and Experimental: Knowledge Production and Tube Feeding Practices in Finland and Poland Malgorzata Rajtar Chapter 5: Entangled and Layered Temporalities: Rare-Disease Patients’ Expectations about Clinical Gene Editing Karoliina Snell, Roosa Harmo, and Kirmo Wartiovaara Chapter 6: Health Emigration in Rare Disease: A Case Study Malgorzata Skweres-Kuchta 89 113 131
vi Contents Chapter 7: “Are You a Disabled Person?”: Disability and Rare Metabolic Disorders in Poland Jan Frydrych 167 Conclusion: Rare Diseases and Cultures of Caring Aaro Tupasela 195 Index 205 About the Editors 209 About the Contributors 211
Index ableism, 181 activism, 104, 189, 199, 202 affective economies, 2 agency, 28, 59, 90, 172, 185 Akrich, Madeleine, 3, 48, 60, 90, 104 anticipation, 116, 124 autonomy, 48, 57; parental, 9, 47, 59-60 Barad, Karen, 4 Batten disease, 11, 20nll, 132, 137-38, 141,201,208 Biehl, Joäo, 12, 179-80 biopower, 171 biosociality, 3, 9, 53, 58, 62, 69, 77, 82, 93 Buck, Pearl S., 7 nourishing, 70, 81-82; routines, 52, 61, 122 chronic: diseases, 5,8, 23, 31,48, 51,70; homework, 10, 23, 29, 37, 70, 81-82; living, 5, 48, 68, 76 CLN2 disease. See Batten disease comparison, 6-7, 58, 91, 126 commensality, 58, 79, 80, 82 COVID-19 pandemic, 2, 29, 35, 64n3, 67, 71, 76, 78, 88nl6, 93, 155-56 CRISPR-Cas9. See gene editing culinary workshops, 9, 53, 67, 69-71, 76-77, 79, 82, 86n7, 200 cure, 10, 48, 73, 115, 121, 127, 201 cyborg, 91-92 care, 23,36,51,61,69-70, 102, 196, 202; cross border, 11, 156, 164n2, 165n26; dietary, 28, 52, 169, 200; inequality of, 114, 140, 199, 202; interrelationality of, 47, 52, 54, 57; kinship, 4, 24,31,35,48, 54,57-58, 100, 142, 148, 151, 157; data, 198; small population, 19n8, 111П12, 114, 118 Davis, Lennard, 170-71 diagnosis, 5, 23, 27-28, 32-33, 58, 67,71,74, 96, 116-17, 122, 134-35, 142-43 disability, 12, 54, 65n7, 116, 146-47, 167, 180, 88; adjudication panel, 176-78, 187; category, 170, 172, 189; 205
206 Index disability certificate, 35-36, 168, 176, 179; episodic, 173, 188; exclusions, 174-76, 187; (in)visible, 173, 183-84; medicalization of, 172, 186; model of, 172, 182, 185 discrimination, 27-28, 114, 117, 139, 156, 172, 181 disruption, 23, 117, 126 entanglement, 4—5, 196-97, 199, 202 enteral nutrition, 95 Epstein, Steven, 48, 90, 103, 140 European Reference Network for Hereditary Metabolic Disorders, 68, 87n9, 154, 165n22 EURORDIS, 3, 132, 136, 144 expertise, 157, 199-200; experiental, 60, 70, 80, 88nl5; embodied, 76 experts, lay, 33, 90, 93, 104-5 family, 5, 8, 23-24, 29, 31-33, 57, 122, 127 FDH. See Finnish Disease Heritage feeding tube, 50, 89, 94-95; as alien object, 101; gastrostomy, 50, 60-61,65n4, 80, 90, 95-96, 99-100, 200; nasogastric, 72, 96, 98, 100 Finnish Disease Heritage, 6, 118, 197 foods for special medical purposes, 9, 20nl0, 53, 68, 73, 75, 79, 87nl0 FSMP. See foods for special medical purposes future, 10, 69, 93, 104, 113-17, 122-27 gene editing, 10, 113, 120-21, 123, 126, 199, 201 genetics, 103, 199 Goffman, Erving, 180-82 good doctor, characteristics of, 55 health emigration, 11,132-33,140-41, 151, 156-57, 201 hygienic vigilance, 65nll IMD. See inborn metabolic disease impairment, 115, 124, 172, 184, 188 inborn metabolic disease, 19n9, 27, 47, 49-50, 56, 68-69, 72, 94, 168-69; management, 24, 50, 75, 94; metabolic chronicity, 51, 53; metabolic decompensation, 49, 56, 59, 74, 94, 188; treatment, 50 judicialization, of health, 12, 65n8, 167, 178-80; of disability, 12, 180, 187, 201 knowledge: experiential, 69-70, 79, 82, 90, 93; production, 104
Koenig, Barbara, 10, 91-92, 97, 99, 105 Mattingly, Cheryl, 10, 29-30, 70, 81-82, 116 MetabERN. See European Reference Network for Hereditary Metabolic Disorders Mol, Annemarie, 68, 70, 81, 202 motherhood, 28, 34-35; matriarchal management, 28-30, 33-36 NBS. See newborn screening newborn screening, 7-8, 22, 27, 47, 50, 68, 87n8, 94, 96, 133, 135, 143-44, 157, 175, 199 norm, 99, 171, 181, 186-87 normal life, 60, 80-82 Novas, Carlos, 27, 195, 199 orphan drug, 11, 141, 154, 156, 198, 201 Oudshoorn, Nelly, 90-92, 101-2, 105
Index 207 parenthood, 62, 102 Parsons, Talcott, 115, 172 patient, 48, 115-16 PEG. See feeding tube phenylketonuria, 7-8, 67; medical history of, 21-22 PKU. See phenylketonuria Pols, Jeannette, 60, 91, 95,101 potentiality, 114-15, 188 and trust, 59; parental, 47, 58-59, 60-62 risk, 31,50, 59-61,72, 114, 12324, 126, 188 quality of life, 53, 61, 98, 105, 124, 196,202 tandem mass spectrometry, 7-8, 27 technological imperative, 10, 91-92, 97 technology, medical, 90, 103; domestication of, 104; ethics, 114, 125-26; normalization of, 115; standardization of, 91, 97-98; users, 92, 100; vulnerability of, 92, 101-2 temporality, 10, 115-16, 121, 126-27 Trnka, Susanna, 8-9, 48, 57, 60 trust, 33, 37, 59, 76, 98, 102, lllnl4 Rabeharisoa, Vololona, 48, 90, 104, 135, 199 Rabinow, Paul, 3, 9, 48, 57, 69, 77, 93 rare disease: and anthropology, 3-4, 27; as boundary object, 4; characteristics of, 1, 5, 119; definition, 1, 25-26; diagnostic odyssey, 116; leveraging, 5; national program, 114; Rare Disease Day, 1, 75, 93; study of, 195, 197 Rare Disease International, 3, 19n5, 25, 44n4, 75, 93, 110n8 resilience, 23, 28-30, 35, 37, 43-44, 101,200-201 responsibility, 29, 35, 48; Shakespeare, Tom, 170-72 sociability, 69, 78, 81-82 stigma, 168, 180-82, 188 subjectivation, 56 United Nations, 2, 193nl0 vulnerability, 2-3, 92 Wahlberg, Ayo, 48, 68, 76, 90, 91, 104, 196 wellbeing, 68, 70, 97, 102, 104-5 |
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| contents | Introduction -- Matriarchal Management, Expert Caregiving, and Intensive Mothering Among Mothers of Children with Phenylketonuria -- Between Paternalism and Autonomy. Polish and Swedish Configurations of Caring for Children with Inherited Metabolic Disease -- Food as Medicine: Culinary Workshops for Patients with Rare Inborn Errors of Metabolism from Anthropological and Dietary Perspectives -- Between Standard and Experimental: Knowledge Production and Tube Feeding Practices in Finland and Poland -- Entangled and Layered Temporalities: Rare-disease Patients' Expectations about Clinical Gene Editing -- Health Emigration in Rare Disease: A Case Study -- "Are You a Disabled Person?" Disability and Rare Metabolic Disorders in Poland -- Conclusion: Rare Diseases and Cultures of Caring |
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| series2 | Anthropology of well-being : Individual, community, society |
| spelling | Entanglements of rare diseases in the Baltic Sea Region edited by Małgorzata Rajtar and Katarzyna E. Król Lanham, Maryland ; Boluder ; New York ; London Lexington Books [2024] © 2024 x, 213 Seiten Illustrationen, Diagramme 24 cm txt rdacontent n rdamedia nc rdacarrier Anthropology of well-being : Individual, community, society Introduction -- Matriarchal Management, Expert Caregiving, and Intensive Mothering Among Mothers of Children with Phenylketonuria -- Between Paternalism and Autonomy. Polish and Swedish Configurations of Caring for Children with Inherited Metabolic Disease -- Food as Medicine: Culinary Workshops for Patients with Rare Inborn Errors of Metabolism from Anthropological and Dietary Perspectives -- Between Standard and Experimental: Knowledge Production and Tube Feeding Practices in Finland and Poland -- Entangled and Layered Temporalities: Rare-disease Patients' Expectations about Clinical Gene Editing -- Health Emigration in Rare Disease: A Case Study -- "Are You a Disabled Person?" Disability and Rare Metabolic Disorders in Poland -- Conclusion: Rare Diseases and Cultures of Caring "Drawing on ethnographic studies of the lived experiences of people with rare diseases, this volume critically examines rare, chronic diseases in the context of care, kinship, and technologies, providing in-depth analyses of local worlds that usually remain at the peripheries of medical anthropological inquiry"-- Anthropologie (DE-588)4002230-4 gnd rswk-swf Medizin (DE-588)4038243-6 gnd rswk-swf Seltene Krankheit (DE-588)4180919-1 gnd rswk-swf Ostseeraum (DE-588)4137210-4 gnd rswk-swf Medical anthropology / Case studies Rare diseases / Treatment Maladies rares / Traitement Medical anthropology Case studies (DE-588)4143413-4 Aufsatzsammlung gnd-content Ostseeraum (DE-588)4137210-4 g Seltene Krankheit (DE-588)4180919-1 s Medizin (DE-588)4038243-6 s Anthropologie (DE-588)4002230-4 s DE-604 Rajtar, Małgorzata (DE-588)132316961X edt Szostak-Król, Katarzyna 1978- (DE-588)143492799 edt Online version Entanglements of rare diseases in the Baltic Sea Region Lanham, Maryland : Lexington Books, [2024] 9781666942392 Digitalisierung BSB München - ADAM Catalogue Enrichment application/pdf http://bvbr.bib-bvb.de:8991/F?func=service&doc_library=BVB01&local_base=BVB01&doc_number=034846515&sequence=000001&line_number=0001&func_code=DB_RECORDS&service_type=MEDIA Inhaltsverzeichnis Digitalisierung BSB München - ADAM Catalogue Enrichment application/pdf http://bvbr.bib-bvb.de:8991/F?func=service&doc_library=BVB01&local_base=BVB01&doc_number=034846515&sequence=000003&line_number=0002&func_code=DB_RECORDS&service_type=MEDIA Register // Gemischte Register |
| spellingShingle | Entanglements of rare diseases in the Baltic Sea Region Introduction -- Matriarchal Management, Expert Caregiving, and Intensive Mothering Among Mothers of Children with Phenylketonuria -- Between Paternalism and Autonomy. Polish and Swedish Configurations of Caring for Children with Inherited Metabolic Disease -- Food as Medicine: Culinary Workshops for Patients with Rare Inborn Errors of Metabolism from Anthropological and Dietary Perspectives -- Between Standard and Experimental: Knowledge Production and Tube Feeding Practices in Finland and Poland -- Entangled and Layered Temporalities: Rare-disease Patients' Expectations about Clinical Gene Editing -- Health Emigration in Rare Disease: A Case Study -- "Are You a Disabled Person?" Disability and Rare Metabolic Disorders in Poland -- Conclusion: Rare Diseases and Cultures of Caring Anthropologie (DE-588)4002230-4 gnd Medizin (DE-588)4038243-6 gnd Seltene Krankheit (DE-588)4180919-1 gnd |
| subject_GND | (DE-588)4002230-4 (DE-588)4038243-6 (DE-588)4180919-1 (DE-588)4137210-4 (DE-588)4143413-4 |
| title | Entanglements of rare diseases in the Baltic Sea Region |
| title_auth | Entanglements of rare diseases in the Baltic Sea Region |
| title_exact_search | Entanglements of rare diseases in the Baltic Sea Region |
| title_exact_search_txtP | Entanglements of rare diseases in the Baltic Sea Region |
| title_full | Entanglements of rare diseases in the Baltic Sea Region edited by Małgorzata Rajtar and Katarzyna E. Król |
| title_fullStr | Entanglements of rare diseases in the Baltic Sea Region edited by Małgorzata Rajtar and Katarzyna E. Król |
| title_full_unstemmed | Entanglements of rare diseases in the Baltic Sea Region edited by Małgorzata Rajtar and Katarzyna E. Król |
| title_short | Entanglements of rare diseases in the Baltic Sea Region |
| title_sort | entanglements of rare diseases in the baltic sea region |
| topic | Anthropologie (DE-588)4002230-4 gnd Medizin (DE-588)4038243-6 gnd Seltene Krankheit (DE-588)4180919-1 gnd |
| topic_facet | Anthropologie Medizin Seltene Krankheit Ostseeraum Aufsatzsammlung |
| url | http://bvbr.bib-bvb.de:8991/F?func=service&doc_library=BVB01&local_base=BVB01&doc_number=034846515&sequence=000001&line_number=0001&func_code=DB_RECORDS&service_type=MEDIA http://bvbr.bib-bvb.de:8991/F?func=service&doc_library=BVB01&local_base=BVB01&doc_number=034846515&sequence=000003&line_number=0002&func_code=DB_RECORDS&service_type=MEDIA |
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