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Majority of females with a life-long experience of CAH and parents do not consider females with CAH to be intersex

Journal of Pediatric Urology Sep 21, 2020

Szymanski KM, Rink RC, Whittam B, et al. - This study was undertaken to investigate the opinions of females with congenital adrenal hyperplasia (CAH), and parents of females with CAH, about designating this population “intersex,” particularly in legislation about genital surgery during childhood. Researchers performed a mixed-methods (quantitative and qualitative) anonymous cross-sectional online survey of females with CAH (46XX,16+years old) and independently included parents of girls with CAH (2019-2020) diagnosed in the first year of life from the United States. They applied Fisher’s exact test to correlate female and parent responses. They further applied a qualitative thematic approach to examine open-ended answers for emergent categories of reasons why CAH females should or should not be considered as intersex. This study included a total of 57 females with CAH participating (median age: 39 years, 75.5% of >= 25year olds had a post-secondary degree). The results of this study demonstrate that majority of females with CAH and parents believe CAH should be excluded from intersex designation and should be considered separately in legislation pertaining to childhood genital surgery in childhood.

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