New Support Groups Formed at LIJ/Cohen Medical Center

The Disorders of Sex Development Program at North Shore-LIJ and The Steven and Alexandra Cohen Children's Medical Center of New York has formed two support groups, and we would appreciate your help in passing this information around so that those who might benefit from the groups know they can join us.

The first group is for mothers of daughters with vaginal agenesis (i.e., incomplete development of the vagina), and the second group is for girls and young women born with vaginal agenesis. Vaginal agenesis can be caused by a number of disorders of sex development (DSD), including most notably MRKH Syndrome and Androgen Insensitivity Syndrome. The aim of this support group is to promote an integrated and holistic approach to care that supports the overall well being of those living with DSD and of their family members.

More specifically, we include among our goals: (1) decreasing isolation and stigma associated with DSD; (2) providing context for patients and families to address their concerns, such as issues around body image, sexuality, and reproduction; (3) connecting those affected with their peers to promote a feeling of normalcy; (4) providing a venue for patients and families to share information and resources; (5) enacting a holistic approach to DSD management.

We know that some people in our area have sought support on the internet, but we believe that face-to-face support is more effective, and can help mitigate the problem of misinformation or misunderstanding sometimes promulgated through the internet.

The groups meet at our Manhasset office location, on Long Island.  It has been amazing to see how the most diverse women have bonded on such a profound level. Participants have described the experience as "cathartic" and "life-changing." Mothers of older daughters have been mentoring mothers whose daughters have recently received diagnoses of vaginal agenesis. Participants have shared thoughts on management of disclosure, on how to think about religious and cultural issues related to sex, marriage and motherhood; and on how to get the best care from clinicians. The common theme in the group has been supporting their daughters and wanting them to feel happy and loved. The energy has been so positive.

The affected girls' and young women's group has been equally successful. Girls have shared their stories about receiving their diagnoses, about handling surgical and non-surgical options, and talked about the social impact of their diagnoses. They have discussed romantic interests, including how and when to manage disclosure to potential sexual partners; and they have communicated about how to deal with the challenges of vaginal dilation. Many of the girls in the group are remarkably confident, secure young women. They range from ages 15 to 23, from high school to post-college. For all, this was the first time they had ever met another person with the same or a similar diagnosis.

We would very much appreciate if you would spread the word about these groups so that more girls and women might benefit. For more information, you can write to me at This e-mail address is being protected from spambots. You need JavaScript enabled to view it  or call us at 516-390-9258.  If you would like to read more about the DSD team at North Shore-LIJ and The Steven and Alexandra Cohen Children's Medical Center of New York, visit: http://www.northshorelij.com/wh/wh-our-services/wh-ped-adol-gynecology and http://accordalliance.org/news/accord-alliance-blog/1286-keeping-an-eye-on-the-whole-person-at-long-island-jewish-lij.html.