Accord Alliance Blog

We have just put up a new page at the Accord Alliance site featuring a list of “Quality Care Indicators” (QCI) for pediatric clinics seeing patients with disorders of sex development (DSD). Click here to see the QCI page.

This list is reproduced with permission from a paper by Claire Sorenson, RN BSN, of Rush University Medical Center in Chicago. Claire became interested in the changes in DSD management through her work as a neonatal intensive care unit (NICU) nurse at Rush. This document was developed by Claire in conjunction with various DSD specialists, including members of Accord Alliance and the AIS-DSD Support Group for Women and Families.

This QCI page boils down the models put forth in recent consensus documents like the American Academy of Pediatrics-endorsed “Chicago Consensus” statement (available by clicking here) and the DSD Clinical Guidelines made available by Accord Alliance through dsdguidelines.org. The QCI page is certainly not meant to be a substitute for those documents, but is rather meant to function as a kind of shorthand checklist for those emerged in DSD care.

We hope that DSD clinical teams and parents of affected children will find this helpful. We also expect that DSD support groups may find the QCI page helpful as they reach out to DSD clinical teams to support movement towards high-quality, evidence-based, patient-centered team care for DSD. This should give us an easier way to see if we are literally all on the same page.

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One of the best routes to helping to reduce stigma around DSD is for stories of adults with DSD to appear in the mainstream media. These stories help put human faces on conditions that are otherwise unfamiliar to most people. I’d just like to highlight some recent mainstream stories of women and men with various types of DSD.

The women’s magazine Marie Claire recently featured a first-person story from Katie Baratz, who has Androgen Insensitivity Syndrome (AIS). (Read it by clicking here.) Katie recently graduated with her M.D. and a master's degree in Bioethics. In the Marie Claire article, Katie talks about how she came to know about her AIS, the struggles she faced in coming to “feel comfortable in my own skin,” falling in love, and being involved in the AIS-DSD Support Group.

SF Gate (web home of the San Francisco Chronicle) recently ran a feature story on Jeanne Nollman, focusing especially on Jeanne’s efforts to help organize a Bay Area DSD parent support group which has begun meeting at UCSF. Jeanne has Swyer syndrome and is currently the President of the AIS-DSD Support Group. In the SF Gate article, UCSF nurse practitioner Angelique Champeau is quoted as saying, “Now when we have a new baby diagnosed [with a DSD], this parent will have a place to go, instead of just hearing from those of us who aren’t living the experience.” Jeanne was also recently featured on a TLC program about her lived experience with DSD.

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