Aimee- I hope you know that I think that you are awsome. And I certainly don’t want to imply that I know what you’ve been through- my powers of empathy are not that great! Please don’t think I’m picking on you.
That being said, 21 OHD in girls *can* affect sexual differentiation. Anytime you have the external genitalia looking different from what your gonads or chromosomes are, there’s a problem. Yes, CAH affects enzyme production in the adrenal gland. However, when the adrenals start pumping out huge amounts of androgens (male sex hormones) due to a lack or cortisol production, that’s going to be a huge problem for girls and women from either a sexual differientation or a reproductive point of view.
I really really do not like the term intersex. Disorders of sexual development (DSD) I think is at least a step in the right direction- at least someone is listening to concerns about the term intersex! I also think that some groups erronious attempt to group everyone with CAH as having problems with sexual differientation to inflate the numbers of people affected by ‘intersex’ conditions. Since these groups are more vocal and more sensationalized than ’adrenal disorders’ groups, CAH is shown in whatever light those groups present it in- essentially that CAH is strictly an intersex disorder. However, I believe that trying to say that CAH is strictly an adrenal disorder is equally as wrong- in some people, genital development is affected and that matter should be addressed. It’s up to us as a group dealing with CAH on a daily basis to educate people on what CAH really is- a deficiency in cortisol synthesis that increases androgen production, which can sometimes have effects on genital development in girls.
Out of curiosity, does anyone know the other ‘intersexed’ conditions group’s stance on this? Do the AIS and alpha 5 reductase deficiency support groups hate the word intersex as much as the CAH groups, and what do they think of this new term?

MarthaF