Hi Jessica,

I too agree with Janet. Our family may mean well by thinking that if we keep this a "secret" a CAH girl will not get hurt but those uneducated people who don’t know any better than to think of CAH as a "sexual" condition. I have two boys with CAH.  I’m not sure how I would feel if I had a girl with CAH. I talked to a mom not too long ago who didn’t want anyone to know her daughter had CAH because she didn’t want any of the kids to make fun of her.  They lived in a small town and she felt the kids would not leave her alone if they knew about CAH because regardless of what CAH is they would only tune in on the genital issues.  I understand that "secrets" are not good because in the end they are hurtful to those that have to keep it. I think where we need to start as parents of CAH kids, and those CAH affected adults, is to change CAH from being considered and "intersex condition" and call it for what it is...an adrenal one.  It’s a hard situation to get around for those that don’t live with CAH or take care of a child with CAH. We know better but those around us may not. I mean, until they told me my son had CAH, I never had heard of it and it terrified me the more they talked about it. Now it’s part of life and not a big deal. I just hope that someday we can talk about CAH for what it is. 

Funny, talking about CAH and our family thinking we’ve made it up...I hear...stop giving them the meds and they will be fine...it’s just doctors trying to get money out of you....the doctors made a mistake...they’ll grow out of it... just don’t talk about it....you talk about it too much...your going to hurt them by giving them so much medicine or it’s not that big of a deal if all the states don’t screen for it!!!! HELLO!!! We are lucky we lived in a state that did screen.. I laugh it off and keep going. I mean sometimes it’s comical and I’m thankful that I have CAH to deal with and not STUPIDITY!!! :)
Ok..done venting!!!

Sandra