I have never liked the term ’intersex’ for CAH.  I also don’t like the term Disorders of Sexual development as it still focuses on the genitals, and I also dislike Diana’s suggestion for the term ’Variance of Genitalia Development.’  This is still concentrating on the genitals!  I think first and foremost the important thing is to make people aware of the life-threatening side of CAH.  By giving titles associated with the sex or genitals, the life-threatening side of CAH becomes secondary.  I’m sure if you ask anyone about diabetes (even if they don’t really know much about it) they would immediately associate it with something to do with sugar.  The first thoughts wouldn’t be to do with impotence or limb amputation (which can happen to some diabetics).  People then know the seriousness of diabetes because the priority is given to the life-threatening side of the illness - the sugar imbalance, the coma that can occur without the correct meds, etc. 

By labelling CAH with a title that has something to do with the genitals you are giving people first impressions of CAH as being always to do with genital problems (as has been said above, boys have CAH too without the genital problems!).   People don’t need much encouragement to start gossiping about ’weird genitals’ and I’m sure that’s the last thing the CAH community want, so why put it in the title?  That’s adding fuel to the fire.   I know the importance I would rather give to CAH is to emphasize that it’s a life-threatening condition.   Just as life-threatening as having diabetes can be.

I hope I got my point across with what I want to say and hopefully it makes sense!