 Anticipated stigma and blameless guilt: Mothers' evaluation of life with the sex-linked disorder, hypohidrotic ectodermal dysplasia (XHED)Angus Clarke Social Science & Medicine, 2016, vol. 158, issue C, 141-148 Abstract: Practical experience of a genetic disorder may influence how parents approach reproduction, if they know their child may be affected by an inherited condition. One important aspect of this practical experience is the stigmatisation which family members may experience or witness. We outline the concept of stigma and how it affects those in families with a condition that impacts upon physical appearance. We then consider the accounts given by females in families affected by the rare sex-linked disorder, X-linked hypohidrotic ectodermal dysplasia (XHED), which principally affects males but can be passed through female carriers to affect their sons. The stigmatisation of affected males is as important in the accounts given by their womenfolk as the physical effects of the condition; this impacts on their talk about transmission of the disorder to the next generation. Keywords: United Kingdom; Stigmatisation; Discrimination; Guilt; Blame; X-linked hypohidrotic ectodermal dysplasia; Grandmother; Reproductive decision (search for similar items in EconPapers) Downloads: (external link) Related works: Export reference: BibTeX RIS (EndNote, ProCite, RefMan) HTML/Text Persistent link: https://EconPapers.repec.org/RePEc:eee:socmed:v:158:y:2016:i:c:p:141-148 Ordering information: This journal article can be ordered from DOI: 10.1016/j.socscimed.2016.04.027 Access Statistics for this article Social Science & Medicine is currently edited by Ichiro (I.) Kawachi and S.V. (S.V.) Subramanian More articles in Social Science & Medicine from Elsevier |
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