When an infant’s sexual organs don’t look like the typical male or female genitalia, doctors usually diagnose the child as having a disorder of sexual development (DSD). Just a few years ago, these variations of sexual development prompted parents and children to suffer in secrecy and, sometimes, shame. But recently a new website, dsdgenetics.org, launched to tackle the misconceptions about this relatively common inherited condition.
“The resource we have developed provides accurate information to help people understand the molecular basis of typical sex development and how changes to this pathway can result in various types of DSDs,” says Andrew Sinclair, PhD, a professor in the department of pediatrics at the University of Melbourne and the deputy director of the Murdoch Children’s Research Institute in Australia.
Although babies may develop sexually along a different pathway than is usual, these variations are not an illness. In medical science, the term “disorder of sexual development” simply reflects the need for doctors to become involved with those who are born this way because of the possible physical complications they may face.
But many people born with any of these variations may prefer to be called “intersex,” another term doctors use. The website’s mission, Sinclair says, is “to provide clear, accessible, scientifically based and up-to-date information about DSD to help patients and their families better understand these complex conditions.”
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