{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,25]],"date-time":"2026-02-25T22:15:16Z","timestamp":1772057716175,"version":"3.50.1"},"reference-count":28,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2021,2,5]],"date-time":"2021-02-05T00:00:00Z","timestamp":1612483200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["U54HG009790"],"award-info":[{"award-number":["U54HG009790"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Molec Gen &amp;amp; Gen Med"],"published-print":{"date-parts":[[2021,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Fragile X Syndrome (FXS) is a neurogenetic condition that significantly impacts the lives of affected individuals and their families due to its association with intellectual disability (ID) and stigma.<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>In this paper, we present the findings of an ethnographic study in the community of a patient who received a genetic diagnosis for FXS in Cameroon. This study builds on data from 28 participants of a royal family and 58 from the community who participated in 20 in\u2010depth interviews and nine focus group discussions.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>We identified two types of stigma in this community: public stigma directed towards the royal family and associative stigma experienced by royal family members. We outline the stereotyping labels used for the family and its children with Fragile X Syndrome and describe the stigma\u2010power dynamic between the community members and the royal family. First, most villagers use less stigmatizing terms to addressing FXS children from the chieftaincy because of their position in society. Secondly, due to their social position, the royal family uses their status to negotiate marriages with community members. From these observations, we can suggest that the primary role of stigma in this community is to keep people away from FXS and keep them down through domination and exploitation.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>We advocate that other researchers examine if the same pattern exists in other inheritable forms of ID and conduct more qualitative research on FXS in Africa.<\/jats:p><\/jats:sec>","DOI":"10.1002\/mgg3.1615","type":"journal-article","created":{"date-parts":[[2021,2,8]],"date-time":"2021-02-08T06:18:18Z","timestamp":1612765098000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Negotiating political power and stigma around fragile X Syndrome in a rural village in Cameroon: A tale of a royal family and a community"],"prefix":"10.1002","volume":"9","author":[{"given":"Karen","family":"Kengne Kamga","sequence":"first","affiliation":[{"name":"Division of Human Genetics Department of Pathology Faculty of Health Sciences University of Cape Town Cape Town South Africa"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1498-3602","authenticated-orcid":false,"given":"Nchangwi Syntia","family":"Munung","sequence":"additional","affiliation":[{"name":"Division of Human Genetics Department of Pathology Faculty of Health Sciences University of Cape Town Cape Town South Africa"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"S\u00e9raphin","family":"Nguefack","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Faculty of Medicine and Biomedical Sciences University of Yaound\u00e9 1 Yaound\u00e9 Cameroon"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1420-9051","authenticated-orcid":false,"given":"Ambroise","family":"Wonkam","sequence":"additional","affiliation":[{"name":"Division of Human Genetics Department of Pathology Faculty of Health Sciences University of Cape Town Cape Town South Africa"},{"name":"Department of Medicine Faculty of Health Sciences University of Cape Town Cape Town South Africa"},{"name":"Institute of Infectious Disease and Molecular Medicine (IDM Faculty of Health Sciences University of Cape Town Cape Town South Africa"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jantina","family":"De Vries","sequence":"additional","affiliation":[{"name":"Department of Medicine Faculty of Health Sciences University of Cape Town Cape Town South Africa"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2021,2,5]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1037\/13620-004"},{"key":"e_1_2_9_3_1","volume-title":"Human nature and the social order","author":"Cooley C. 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