I was aware of this group, and being prompted by the Discovery Show, I emailed them as to exactly how many members they have who have CAH. I was curious to see if the gender issue did really affect CAH women or was it just that because of the ambiguous genetalia at birth that this organization included this condition under their specialties. Here is my letter to them, and their response. I am thinking of telling them that I would like to be put in contact with some of these people so I can see for myself exactly what their issues are...what do you think? I think I would be curious to see what they would say. Here goes: Hi Eileen, Sorry for the delay in answering. We are quite swamped with mail. >Hello. I am the mother of an 8 year old girl with Congenital Adrenal >Hyperplasia. My daughter was severely virilized at birth, and we were told >she was a boy. Upon diagnosis of her CAH and being told she was a girl, we >arranged for her reconstructive surgery which she had at 8 months of age. > >I am aware of your organization. I have spoken at length with Suzanne >Kessler, and have been interviewed by her for her recent book, "Lessons from >the Intersexed".  > >I was watching the Discovery Channel this evening and have seen many talk >shows lately regarding intersexed conditions. I was alarmed at the number of >adult women who were born with ambigious genetalia, and are now enraged at >their parents for electing to have surgery performed on them when they were >infants. > >I have a question....of these women...and those who are members of your >organization..how many of them are afflicted with CAH? When my daughter was >born, the reconstructive surgery was never really offered as an option, but >as a necessity. I was just curious as to the number of people in your >organization that are CAH patients. We are in touch with dozens of women with CAH. Would you like me to introduce you to some? We are opposed to genital surgery on infants, based upon the experiences of adults who had surgery as children and some who did not, because: a) it damages sexual function, b) it conveys a message that sexual difference is not acceptable, but even after surgery sexual difference is not eliminated, and c) a sizeable minority of people born with genital ambiguity do not develop a gender identity in accord with that assigned by doctors. There is data in the medical literature on CAH that supports our experience that homosexual orientation, abstinence from sex, and (occasionally) male gender identity are more common than for other people. However, the metabolic aspects of CAH also present ongoing and complex medical problems, and we just don't have the resources to provide support for these. There is little reason to think that genital surgery for girls with CAH is very different, or has different prospects in a narrow technical sense, than for any other intersex condition that produces genital ambiguity. The one exception is the added complication in CAH, there may be ongoing virilization, so any clitoral tissue which the surgeon has buried may continue to grow, leading to a situation in which sexual arousal is painful (because the clitoral tissue is surrounded by tissue that doesn't stretch). > >I want to thank you very much in advance for any information you can offer me. > >Eileen Wells We use the media to present our message -- that intersexuality is not shameful -- to the broadest possible audience. To date, we have not met an intersexed adult who had surgery as a child and who believes that early surgery is a good policy. I think that parents generally try to make the decisions that are best for their children. In the case of genital surgery, doctors have not been providing complete and accurate information to parents.There are intersexed adults in ISNA who have good relationships with their parents (despite regret over early surgery). Those who are so angry are usually people whose parents have remained secretive and shameful about the sexual issues that accompany intersexuality. We are encouraged by the formation of the North American Task Force on Intersex. This is a new medical organization which will be trying to improve medical handling of intersexuality, especially CAH. You can see a press release about the formation of NATFI at ISNA's web site. One of the issues that NATFI will be addressing is adequate informed consent for parents being asked to authorize genital surgery on their children. We at ISNA believe that parents must be given much more information, and access to peer support, where they can meet other parents of intersexed children, and intersexed adults. That would give them a much clearer picture of the complexities involved, and let them take time to weight decisions about surgery which will have profound and lifelong effects on their child. I would be happy to talk with you more about anything that is on your mind, or to make introductions to people with CAH.