Having just read the above document (to be published shortly), I was delighted to note that the consensus group (made up of LWPES/ESPE professionals Worldwide and a few support group reps, although none from the CAH community) took on board the dislike by patients/parents of the term ’intersex’.   The new term proposed is ’Disorders of Sex Development (DSD), which will incorporate congenital conditions in which development of chromosomal, gonadal or anatomical sex is atypical. 

I know there is strong feeling amongst us to disassociate CAH from the word ’intersex’ and this is a step in the right direction, showing the ’experts’ are listening! I would be very interested to hear what parents/patients think of this new terminology though?  I  will report back all your comments to the committee, so please let me know if you approve or disapprove and the reasons why. 

Thank you in advance for your assistance with this!