Mainstream stories of women and men with DSD

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.

The story of Jim, a man born with partial Androgen Insensitivity Syndrome (pAIS), was featured in a recent post at the Hastings Center’s Bioethics Forum. As the column recounts, Jim’s parents were advised at his birth to raise him a girl, but they declined that advice. The post tells of Jim’s 50-year journey to come to terms with his history and to meet other men born with disorders of sex development.

Finally, the Oprah Winfrey Network is currently running a program about people with DSD. The program was produced by the BBC in conjunction with Discovery Documentaries. I was among those interviewed for the program, as were Tiger Devore and Katie Baratz’s mother Arlene Baratz, both Advisors to Accord Alliance.

My personal thanks to all those affected by DSD who have stepped up to share their stories with the world! This kind of outreach is invaluable to our efforts to improve the lives of those affected by DSD.

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