Then this is a missed opportunity to really learn about the condition and the focus just on the surgery part makes it harder again for medical treatment and this has been my experience. 

Doctors have the "just" that CAH sometimes involves surgery but they aren’t really taught about the rest of it in medical school because there is so so so x 100000000 that they have to learn about everything. Better all around medical treatment might come if surgery isn’t the main focus. Lets discuss the surgery while other medical problems get dismissed and my life has been in jeopardy because of that.

Back awhile I told an ER doc that I had CAH and that I take prednisone and his next response was "why do you take the prednisone?" There was no connection to the CAH for him. I take prednisone because of the CAH because because my body doesn’t make cortisol that need in times to help with physical stress and to suppress excessive androgens or the time when I told a doctor about CAH and the surgeries and he asked excited like a little kid"Why did you have those surgeries done?" because CAH  caused a completely fused labia and a urogenital tract that I voided through.I also try to explain my deficiency on the metabolic pathway that caused the CAH. This wasn’t an enlarged clitoris but rather we aren’t sure what sex this baby is until we do more testing. Should I of had to explain all that to him? Does a diabetic have to explain everything?No, because doctors have an idea of what that is. 

Stories just on genital surgeries lose something in translation for me and and that is the whole picture of this medical condition and it’s scary to always have to explain CAH to the doctors because you have to hope that you have one that is going to listen to you.

Is the newspaper going to include stories from parents that have kids that needed surgeries for things like congenital heart problems or bone surgeries? or is it just going to be genital surgeries, CAH and all the other conditions that might require genital surgeries? If so, is the medical (urologist) community going to have any input in this article?

Is it a girl? Is it a boy ? Is it bird ? Is it a plane? Or one of those YES, she was born like that but we love her just the same stories? I read one of those stories back in the 80’s  blah blah put a stigma on someone already and then when she is going to the ER because she needs extra cortisol now she not only has to contend with trying to explain about needing the cortisol but first she has to get through the medical staff that will go "oh we read a story about those surgeries in the paper" Yeah, great Doc but I need my solu-cortef" and why do you need that ?  likely the doctor will reply because the surgery part point of focus and not that the adrenal gland is begging for cortisone.

I go to deep and I’m someone that wants it better for CAH and is tired of always having to explain. I have friends that are in medical school that told me about how more was spent on the surgery part "the controversy part" and how little was spent on when someone comes in the hospital with adrenal insufficiency/adrenal crisis.

I was in the hospital for something else and it progressed to emergency exploritary surgery and I had a feeling (survival instinct kicking in) that nobody had called the endo back( everything was happening so quickly) and they weren’t aware that not only did I need the solu-cortef that the endo (bless him) had ordered and they were giving me but I also needed more for the surgery and I told the nurse I needed the solu-cortef for the Operating room also. The nurse said, " they will know about that in the OR" I told her in a nice way so she would listen to me "No they will not " and asked her to call down. I’m lucky that I did this because when I got down to the Operating room, they thanked me for telling them because they had no idea about the support I needed from the the extra med to deal with not only the excessive bleeding but also the physical stress of the surgery.  

This is just my two cents and doesn’t mean much. The newspaper will get some parent or person that will enjoy the opportunity to be featured in an article just based on the genital surgery decision and that is cool. To each his own.