I recieved a few responses from the ISNA members I have emailed. I will post them here. I am not including their names or emails..as they have requested I not, without permission. If you have any questions you would like for me to ask or inquire about...I have many myself..feel free to email me. Eibhlinron@aol.com or just post here. I will check back frequently. Response #1..... Hi Eileen, I am a 35 year old who also has salt losing CAH. I was born in a small town as "a male" since I had a penis and scrotum with undecended testes. A few weeks after my birth I suffered an adrenal crisis and was taken to the same small town hospital. Fortunately, the pediatrician had a clue (and suspected the CAH) and immediately sent my parents to Johns Hopkins Hospital. It was there that the diagnosis of CAH was confirmed and treatment began. My parents agreed to let them do surgery to make me a girl (remove penis and scrotum). They also treated me with steroids. As a child (and still) I consider myself a tomboy. I love to be outside and not only do I play sports but I watch and comprehend sports on TV. I have shocked more men/boys when they hear that I can hold an intelligent sports conversation other that "they look cute in those tight football pants." I quit going to JHH at the age of 21 when I found an endocrinologist who treated me as a person -- not as a lab rat. Please do not let them "put your child on display" (in front of 2 or more residents/med students at a time. If they insist on doing that, please find go to another endocrinologist. I have not had any problems since leaving JHH. In fact I feel that I have received better care since I am not seen by residents who are just learning. My current endo switched my meds and gave me new info never given to me by residents. Because I am salt losing, I find I have problems in the summer due to high humidity (increased sweating) and the fact that I love to be outdoors. The resident @ JHH did not find this out (my current endo did)! Resonse #2..... Eileen, Pleased to make your acquaintance. I am one of the earliest members of ISNA and know Cheryl. I was also interviewed for Dr. Kessler's book, "Lessons from the Intersexed" as well as for several other articles and books in print and forthcoming. I'm something of an academic geek and I give lectures at colleges and universities on Intersexuality. How do I feel? Let me relate a few things to you up front: I have always been a "tomboy," too, like you and your daughter. I continue to this day to present as a masculine female. You should also know that I had my operation at the age of 13, and that was in the mid-1970's. I consider it forced feminization. My endocrinologist believed then that the surgical techniques on younger children and infants was too risky, hence they waited until my body hit a maturation stage that was nearly complete (which it was, my shoe size hasn't changed and I only grew another 1.5 inches). They also lied to my parents and told them that the operation was a matter of "life and death." Given the late age, and the constant insistence that I was a "normal" girl, when it was obvious that I was not, plus the lying to me and my parents, I do not feel good about my complete vaginoplasty. I use words like "rape" and "mutilation" to describe the event. I find it morally abhorrent that these surgeries are all largely about cosmetics, to enforce some arbitrary standard that says biological sex is congruent with gender. In my opinion, it is the medical community that is setting itself up as guardians of normalcy and if you are not in conformity, then that must be changed, because, after all, society really isn't elastic enough or people are not tolerant enough to accept the different or unique ... which, I think is not true! Left to my own devices, I can't say for sure if I would have opted to be male or not. The tomboyishness of which you mention is one thing, but for me, I think it might have gone a step farther. Female socialization is and was very much lost on me. When I lecture college classes nowadays, the students usually peg me as a male in my thought patterns and in relation to women. For obvious reasons, I do not consider myself wholly female and I relate to women as a man does, as an "other." While constantly being treated I was asked, "Don't you want to grow up and get married and have children?" My answer has been the same since I recall the first time I was asked (around age 7), "NO." Unlike most tomboys, I never felt attracted to men, nor did I ever exhibit female role-modeling, like having a baby doll. Boys were my comrades and chief competitors. I seemed to have more in common with them than with girls. The common fallback for endos is to say the child's karyotype is XX (or XY) determines the course of treatment. That is what happened with me, too. But the problem is if the child is aphenotypical, which, I believe current studies (Dr. Maria I. New) show is the case in something like 50% of CAH babies. Phenotype is the expression of the genes, and I tend to think that is in some respects is more important. Please, please, understand, this is my story. Not your daughter's. I had surgery much later and I have always been very masculine in my psychology as well as my physiology and behavior. You can take heart, I am not angry with my parents at all and I have an extremely close relationship with them both, I love them very, very much. I recognize the trauma of my operation and treatment as what it was, a juggernaut of the medical community. I wish the doctors would have done what my parents did: practice benign neglect and left me alone to make up my own mind. These are my feelings, I hope the are not too harsh for you, and if I have offended you, my apologies. Respnse #3....... Hello Eileen. It's nice to meet you. I do believe I remember you from that 20/20 episode. I'm not sure what particular issues pertaining to intersex you are interested in hearing my, and other CAH women's, feelings on. The older I've gotten (I'm 22) the more I realize that there are many aspects to this condition; to name just a few: medical, social, emotional, psychological, religious, etc. Many of these conflict violently with each other (i.e. mixed messages) and are/were very difficult for me to reconcile for myself. Of course, everyone's experience is different. I do have the salt wasting version of CAH, presumably the same as your daughter has. At birth the doctors told my parents they didn't know what sex I was, but that I was "probably a girl." They didn't reccomend surgery then (which I've recently learned is very unusual) and I've NEVER had any genitoplasty surgery since, quite by choice. From the moment of birth it was constantly hammered into my family and I that I had a "problem" that needed "correcting." I beg to differ - they are the one's who have the problem. There is no reason for you to think that you may have changed your daughter's sex. She will be whatever she is on the inside (her personality, who she is as an individual) regardless of how she is fashioned on the outside, surgery or otherwise. There also is no reason to feel guilty about allowing surgery to be performed on her (I'm not presuming that you do, just that some parents have felt this way.). Doctors are very, very convincing when it comes to treatment options or lack of options. As far as the tomboy issue is concerned I basically consider it a non-issue. I've known so many non-intersexed tomboys in my life; they are simply everywhere... In conclusion, I have to say that having CAH has been both a curse and the greatest blessing I could ever have imagined. If you want to discuss anything further with me, or in more detail, don't hesitate to write again.