Isna.org Website Review

We have learned from listening to individuals and families dealing with interse* that: The Interse* Society of North America (ISNA) was founded in 1993 in an effort to advocate for patients and families who felt they had been harmed by their experiences with the health care system. From these scrappy, brave, and confrontational beginnings, ISNA evolved into an important resource for clinicians, parents, and affected individuals who require basic information about disorders of se* development (DSDs) and for how to improve the health care and overall well-being of people with DSDs. Largely as a result of ISNA’s efforts, there is now widespread acknowledgment among health professionals that the time has come to change how we think about and care for persons with DSDs. Here are two recent and striking examples of this shift: sounded an alarm by describing the clinical management and treatment of DSDs as being “in crisis” due to multiple challenges to the traditional standard of care, and noting “there are insufficient data to guide the clinician and family” in making decisions about Although it is far from perfect, some of the ground-breaking changes advocated in the Consensus Statement (CS) include: patients and families is essential and that it helps with well-being; that genital exams and medical photography should be limited; and that care should be more focussed on addressing stigma not solely gender as*ignment and genital appearance. cases”; and no va*inal dilation before puberty. It also states that the functional outcome of genital surgeries should be emphasized, not just cosmetic appearance. Perhaps most importantly it acknowledges there is no evidence that early surgery relieves parental distress. shift will help clinicians move away from the almost exclusive focus on gender and genitals to the real medical problems people with DSD face. Improving care can now be framed as healthcare quality improvement, something medical professionals understand and find