{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,14]],"date-time":"2026-05-14T23:23:57Z","timestamp":1778801037831,"version":"3.51.4"},"reference-count":37,"publisher":"Public Library of Science (PLoS)","issue":"6","license":[{"start":{"date-parts":[[2013,6,24]],"date-time":"2013-06-24T00:00:00Z","timestamp":1372032000000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS ONE"],"DOI":"10.1371\/journal.pone.0066804","type":"journal-article","created":{"date-parts":[[2013,6,24]],"date-time":"2013-06-24T21:24:24Z","timestamp":1372109064000},"page":"e66804","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":9,"title":["Illness Perception and Clinical Treatment Experiences in Patients with M. Maroteaux-Lamy (Mucopolysaccharidosis Type VI) and a Turkish Migration Background in Germany"],"prefix":"10.1371","volume":"8","author":[{"given":"Hansj\u00f6rg","family":"Dilger","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Linn","family":"Leissner","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lenka","family":"Bosanska","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Christina","family":"Lampe","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ursula","family":"Pl\u00f6ckinger","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"340","published-online":{"date-parts":[[2013,6,24]]},"reference":[{"key":"ref1","doi-asserted-by":"crossref","first-page":"87","DOI":"10.1038\/sj.ejhg.5201044","article-title":"Prevalence of lysosomal storage diseases in Portugal","volume":"12(2)","author":"R Pinto","year":"2004","journal-title":"European Journal of Human Genetics"},{"key":"ref2","doi-asserted-by":"crossref","first-page":"249","DOI":"10.1001\/jama.281.3.249","article-title":"Prevalence of lysosomal storage disorders","volume":"281(3)","author":"PJ Meikle","year":"1999","journal-title":"JAMA"},{"key":"ref3","doi-asserted-by":"crossref","first-page":"151","DOI":"10.1007\/s004399900075","article-title":"The frequency of lysosomal storage diseases in The Netherlands","volume":"105(1\u20132)","author":"BJ Poorthuis","year":"1999","journal-title":"Human Genetics"},{"key":"ref4","doi-asserted-by":"crossref","first-page":"355","DOI":"10.1007\/s004390050641","article-title":"Incidence of the mucopolysaccharidoses in Northern Ireland","volume":"101(3)","author":"J Nelson","year":"1997","journal-title":"Human Genetics"},{"key":"ref5","first-page":"389","article-title":"An update on the frequency of mucopolysaccharide syndromes in British Columbia","volume":"85(3)","author":"RB Lowry","year":"1990","journal-title":"Human Genetics"},{"key":"ref6","doi-asserted-by":"crossref","first-page":"144","DOI":"10.1002\/ajmg.a.30579","article-title":"Threshold effect of urinary glycosaminoglycans and the walk test as indicators of disease progression in a survey of subjects with mucopolysaccharidosis VI (Maroteaux-Lamy syndrome)","volume":"134A(2)","author":"SJ Swiedler","year":"2005","journal-title":"American Journal of Medical Genetics"},{"key":"ref7","doi-asserted-by":"crossref","first-page":"405","DOI":"10.1542\/peds.2006-2184","article-title":"Management Guidelines for Mucopolysaccharidosis VI","volume":"120(2)","author":"R Giugliani","year":"2007","journal-title":"PEDIATRICS"},{"key":"ref8","doi-asserted-by":"crossref","first-page":"1011","DOI":"10.1007\/s10545-005-0112-z","article-title":"Cumulative incidence rates of the mucopolysaccharidoses in Germany","volume":"28(6)","author":"F Baehner","year":"2005","journal-title":"Journal of inherited Metabolic Disease"},{"key":"ref9","first-page":"22","article-title":"Angeborene Stoffwechselerkrankungen Besonderheiten in der Betreuung von Kindern aus Migrantenfamilien","volume":"153(1)","author":"S St\u00f6ckler-Ipsiroglu","year":"2005","journal-title":"Monatszeitschrift Kinderheilkunde"},{"key":"ref10","doi-asserted-by":"crossref","first-page":"6","DOI":"10.1016\/j.ijcard.2011.06.097","article-title":"Cardiovascular manifestations of mucopolysaccharidosis type VI (Maroteaux-Lamy syndrome)","volume":"158(1)","author":"A Golda","year":"2012","journal-title":"International Journal of Cardiology (Netherlands)"},{"key":"ref11","doi-asserted-by":"crossref","first-page":"695","DOI":"10.1016\/j.ymgme.2011.08.024","article-title":"Mucopolysaccharidosis type VI (Maroteaux-Lamy syndrome) with a predominantly cardiac phenotype","volume":"104(4)","author":"A Jurecka","year":"2011","journal-title":"Molecular Genetics and Metabolism"},{"key":"ref12","article-title":"Clinical characteristics of adults with slowly progressing mucopolysaccharidosis VI: a case series","author":"A Th\u00fcmler","year":"2012","journal-title":"Journal of Inherited Metabolic Disease"},{"key":"ref13","article-title":"Enzyme replacement therapy for mucopolysaccharidosis VI: long-term cardiac effects of galsulfase (Naglazyme(\u00ae)) therapy","author":"E Braunlin","year":"2012","journal-title":"Journal of Inherited Metabolic Disease"},{"key":"ref14","doi-asserted-by":"crossref","first-page":"956","DOI":"10.2174\/138920111795542688","article-title":"Recent advances in treatment approaches of mucopolysaccharidosis VI","volume":"12(6)","author":"R Giugliani","year":"2011","journal-title":"Current Pharmaceutical Biotechnology"},{"key":"ref15","first-page":"830","article-title":"\u201cOver-Foreignization\u201d or \u201cUnused potential\u201d? A critical review of migrant health in Germany and responses toward unauthorized migration","volume":"74(6)","author":"H Casta\u00f1eda","year":"2011","journal-title":"Social Science & Medicine"},{"key":"ref16","unstructured":"Dilger H, Wolf A (together with the study group \u201cMigration and Health in Berlin\u201d) (2009) Final report of the study group \u201cMigration and Health in Berlin\u201d, funded by the Volkswagen Foundation. Institute of Social and Cultural Anthropology, Freie Universit\u00e4t Berlin, September 2009."},{"key":"ref17","article-title":"Migration und Gesundheit. Konrad Adenauer Stiftung","author":"M Knipper","year":"2009"},{"key":"ref18","article-title":"Migration und Gesundheit","year":"2008"},{"key":"ref19","article-title":"Der Mythos vom gesunden Migranten","year":"2011"},{"key":"ref20","unstructured":"Verwey M (2003) Hat die Odysse Odysseus krank gemacht? Migration, Integration und Gesundheit. In: Lux T, Kulturelle Dimensionen der Medizin. Ethnomedizin \u2013 Medizinethnologie \u2013 Medical Anthropology. Berlin: Dietrich Reimer Verlag, 277\u2013307."},{"key":"ref21","unstructured":"Weiss R (2003) Macht Migration krank? Eine transdiziplin\u00e4re Analyse der Gesundheit von Migrantinnen und MigrantInnen. Z\u00fcrich: Seismo Verlag."},{"key":"ref22","doi-asserted-by":"crossref","first-page":"e294","DOI":"10.1371\/journal.pmed.0030294","article-title":"Anthropology in the Clinic: The Cultural Competency Problem and How to Fix It","volume":"3(10)","author":"A Kleinman","year":"2006","journal-title":"PLoS Medicine"},{"key":"ref23","doi-asserted-by":"crossref","unstructured":"Kleinman A (1980): Patients and healers in the context of culture. An exploration of the borderland between anthropology, medicine, and psychiatry. Berkeley: University of California Press.","DOI":"10.1525\/9780520340848"},{"key":"ref24","doi-asserted-by":"crossref","first-page":"897","DOI":"10.1002\/humu.20534","article-title":"Mutational Analysis of 105 Mucopolysaccharidosis type VI patients","volume":"28(9)","author":"L Karageorgos","year":"2007","journal-title":"Human Mutation"},{"key":"ref25","doi-asserted-by":"crossref","first-page":"330","DOI":"10.1007\/s00112-008-1683-1","article-title":"Autosomal-rezessive Erkrankungen in Migrantenfamilien","volume":"156","author":"O Steinlein","year":"2008","journal-title":"Monatszeitschrift Kinderheilkunde"},{"key":"ref26","doi-asserted-by":"crossref","first-page":"533","DOI":"10.1016\/j.jpeds.2005.12.014","article-title":"Enzyme replacement therapy for mucopolysaccharidosis VI: a phase 3, randomized, double-blind, placebo-controlled, multinational study of recombinant human N-acetylgalactosamine 4-sulfatase (recombinant human arylsulfatase B or rhASB) and follow-on, open-label extension study","volume":"148(4)","author":"P Harmatz","year":"2006","journal-title":"Journal of Pediatrics"},{"key":"ref27","doi-asserted-by":"crossref","first-page":"e681","DOI":"10.1542\/peds.2004-1023","article-title":"Direct Comparison of Measures of Endurance, Mobility, and Joint Function During Enzyme Replacement Therapy of Mucopolysaccharidosis VI (Maroteaux-Lamy Syndrome): Results After 48 Weeks in a Phase 2 Open-Label Clinical Study of Recombinant Human N-Acetylgalactosamine 4-Sulfatase","volume":"115(6)","author":"P Harmatz","year":"2005","journal-title":"PEDIATRICS"},{"key":"ref28","doi-asserted-by":"crossref","first-page":"469","DOI":"10.1016\/j.ymgme.2008.04.001","article-title":"Long-term follow-up of endurance and safety outcomes during enzyme replacement therapy for mucopolysaccharidosis VI: Final results of three clinical studies of recombinant human N-acetylgalactosamine 4-sulfatase","volume":"94(4)","author":"P Harmatz","year":"2008","journal-title":"Molecular Genetics and Metabolism"},{"key":"ref29","first-page":"459","article-title":"A systematic review of new advances in the management of mucopolysaccharidosis VI (Maroteaux-Lamy syndrome): focus on galsulfase","volume":"3","author":"RP El Dib","year":"2009","journal-title":"Biologics"},{"key":"ref30","unstructured":"Marschalck P, Wiedl KW (2001) Migration, Krankheit und Gesundheit: Probleme der Forschung, Probleme der Versorgung- Eine Einf\u00fchrung. In: Marschalck P, Wiedl KW, Migration und Krankheit. Osnabr\u00fcck: Universit\u00e4tsverlag Rasch, 9\u201337."},{"key":"ref31","doi-asserted-by":"crossref","unstructured":"Nichter M (2002) The social relations of therapy management. In: Nichter M, Lock M, New Horizons in medical Anthropology. Essays in Honour of Charles Leslie. New York: Routledge, 81\u2013111.","DOI":"10.4324\/9780203398517_chapter_4"},{"key":"ref32","first-page":"387","article-title":"The importance of knowing about not knowing","volume":"15(3)","author":"M Last","year":"1981","journal-title":"Social Science & Medicine"},{"key":"ref33","doi-asserted-by":"crossref","unstructured":"S\u00f6kefeld M (2008a) Aleviten in Deutschland. Identit\u00e4tsprozesse einer Religionsgemeinschaft in der Diaspora. Bielefeld: transcript Verlag.","DOI":"10.14361\/9783839408223"},{"key":"ref34","unstructured":"Vorhoff K (1995) Zwischen Glaube, Nation und neuer Gemeinschaft: Alevitische Identit\u00e4t in der T\u00fcrkei. Berlin: Klaus Schwarz Verlag."},{"key":"ref35","unstructured":"S\u00f6kefeld M (2008b) Struggling for Recognition: The Alevi Movement in Germany and in Transnational Space. New York: Berghan Books."},{"key":"ref36","unstructured":"Aks\u00fcnger H, Robert R (2010) Inklusion statt Exklusion? Aleviten in der T\u00fcrkei. In: R\u00fcdiger R, Schlicht D, Saleem S, Kollektive Identit\u00e4tskonstruktionen im Nahen und Mittleren Osten. Studien zum Verh\u00e4ltnis von Staat und Religion. M\u00fcnster: Waxmann, 479\u2013500."},{"key":"ref37","first-page":"75","article-title":"\u201cIn der Familie haben wir nie \u00fcber MPS geredet.\u201d Der Einfluss des sozial-famili\u00e4ren Umfelds auf Gesundheitspraktiken und Krankheitserfahrungen t\u00fcrkischst\u00e4mmige Migranten mit MPS VI","volume":"14(2)","author":"L Lei\u03b2ner","year":"2012","journal-title":"Ethnoscripts"}],"container-title":["PLoS ONE"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/dx.plos.org\/10.1371\/journal.pone.0066804","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,2,26]],"date-time":"2022-02-26T05:46:57Z","timestamp":1645854417000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0066804"}},"subtitle":[],"editor":[{"given":"Francesc","family":"Palau","sequence":"first","affiliation":[],"role":[{"role":"editor","vocabulary":"crossref"}]}],"short-title":[],"issued":{"date-parts":[[2013,6,24]]},"references-count":37,"journal-issue":{"issue":"6","published-online":{"date-parts":[[2013,6,24]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0066804","relation":{},"ISSN":["1932-6203"],"issn-type":[{"value":"1932-6203","type":"electronic"}],"subject":[],"published":{"date-parts":[[2013,6,24]]}}}