Ann- there have been documented cases of women with SVCAH being completely virilized. Goodness knows how they survived, but they are out there. Once again, these cases demonstrate the broad spectrum of how CAH presents!

Megan- I think you’ve posted something similiar before, and it did give me pause to stop and think about CAH that way. I appreciate your thought on giving me a new way to look at things.

To play the devil’s advocate, here’s another reason on perhaps why girls with 21 OHD should be classified as DSD. Their ambiguous genitalia is the red flag for their CAH. It is a physical symptom that docs can immediately note and hopefully think ’cortisol/aldosterone deficiency’. I know that after my daughter was born the doc came into the room saying that a cortisol deficieny might be the reason for her ambiguous bits. Because of this, my daughter promptly got the tests (and the treatment) for CAH. Yes, DSD may be a label she’d have to deal with the rest of her life, but if it gets her the immediate life saving medical attention she needs, I’ll take it. I know that I have great sympathy for the parents of little boys with CAH- I got the quick diagnosis, while their boys go on and on getting sicker and sicker and no one can figure out what’s going on. I imagine it’s absolutely horrible.

I guess it’s a case of picking your poison. I really don’t think there’s ever going to be a good way of classifing virilized girls ( or undervirilized boys) with CAH. Personally, I think that CAH with secondary psuedohemaphradism a is fairly accurate description of what’s happened with the girls, but I can understand why people don’t like that terminiology. I always find other people’s opinions and take on things very interesting, tho!

Martha