Growing up and living with neurofibromatosis1 (NF1): a British Bangladeshi case-study

In this article, I analyse a narrative by Rohima(1), a Bangladeshi woman now living in the UK who was diagnosed in adulthood as having NF1 (neurofibromatosis). While some themes in her narrative account resemble those of persons with NF1 in the general European and American population, other themes relate specifically to Bangladeshi cultural issues and practices. These particularly concern gender, sexual identity and marriage. As a young woman, Rohima's dark skin coloration and the tumors or lumps associated with her condition led her parents and relatives to regard her as unmarriageable and in effect, despite her evident intelligence and competence, to deny that she was a woman. Bangladeshi men and women alike found her appearance a bar to any social acceptability. Even after her marriage (to a non-Bangladeshi man), her family have been unwilling to accept her and her children fully into their kinship network. The article explores the consequences of genetic disorders such as NF1 in cultures where social identity and concepts of personhood, particularly for women, are inextricably related to appearance and to judgements regarding marriageability.