Explaining differences of sex development (DSD) remains one of the most challenging aspects of both medicine and communication. Accepting that a girl can have XY chromosomes and testes and still grow up, live, and identify as female is conceptually demanding. Understanding why their testes are often valuable in terms of their health and wellbeing is quite difficult.
Most families and individuals will only ever encounter one specific diagnosis — Swyer, CAIS, PAIS, PGD, 17β-HSD deficiency, SF1, or 5α-reductase deficiency — and may have little understanding of other conditions or of the wide variation within each. Even within high-resource settings, it takes time, experience and a well-functioning multidisciplinary team (MDT) to help a young person or adult understand their body, their development, and what it means for them (e.g. infertility).
Since 2006, every major medical and psychological guideline on DSD—from the Chicago Consensus Statement to the Multi-Stakeholder Opinion on the Care of Individuals with DSD—has emphasised wellbeing, openness, and reduction of stigma as central to the highest standard of care.
Advocacy organisations like dsdfamilies, an invited stakeholder to WA’s March consultation on eligibility and working in partnership with NHS England and Specialist professional bodies on DSD care, as well as Human Rights groups such as Interaction, a longstanding partner of the United Nations and Council of Europe work around Innate Variation of Sex Characteristics, for years have worked to promote understanding and acceptance of DSD/IVSC, reduce stigma, and improve psychosocial wellbeing.
We now ask policymakers, sports federations, and media to comprehend this same complexity. From outside, it may seem simple and practical to 'draw a line in the sand,' yet human biology and lived reality defies such neat divisions. That doesn’t mean that eligibility cannot be discussed, but that discussions on eligibility and any resulting actions, have to comply with the medical and psychological body of work on DSD.
You can read a selection of media articles in our global coverage area.
You can read general FAQ's about dsd's in our FAQ area.
Check back here soon - later in November, for our support leaflet for families.
