Negotiating political power and stigma around fragile X Syndrome in a rural village in Cameroon: A tale of a royal family and a community

Abstract

Background 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. Method 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‐depth interviews and nine focus group discussions. Results 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‐power 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. Conclusion 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.

A Comprehensive Review of Fragile X Syndrome and Fragile X Premutation Associated Conditions in Africa

“…This stigma from cultural beliefs may hinder early identification and testing because families and or communities may conceal affected individuals to prevent alienation by unaffected community members. Kamga et al [ 94 ] in their qualitative study in Cameroon reported the experience of a mother who had two children with FXS. She was a descendant of the founder of a powerful royal family and despite this, they clearly experienced stigma, isolation, and name-calling.…”