Aimee and Sue I agree with you on this,  I do not have CAH but my son does.  I am glad to see the word intersex has changed - but to what........ another word that has sex in it - why can this not be a metabolic problem.  Not every girl is virilised and boys are not intersexed in the slightest.  In my opinion this leads doctors , nurses and the general public who are not educated on CAH and we all know there are lots out there, who focus on the sex side of the condition and NOT the life threatening day to day replacing of life sustaining hormone.  It sickens me they have just changed the title - oh yes so they now appreciate it is NOT two sexes in one person as the title intersex suggests but I still see that word sex there - so again is this just a girl condition then??? I hope the rest of the statement is a little more promising, we need better care for people with CAH and more research. I do not believe the word intersex will ever stop being used as a label for CAH.  I appreciate that not every is offended by this and can glass over it- wait until your son comes home from school after some young girl has written for a magazine about having CAH and being intersexed - having been bullied being told he must be part girl!!!!   I hope Kelly from CARES will comment on this. Thank you Sue - tell them from me I still think their new title stinks. Mary