I am a frequent reader of this board and learn many things which I can pass on to others - parents, health care professionals etc. I am updating some of the nursing materials on CAH. Recently my colleague and I updated the chapter on CAH for the Pediatric Endocrinology Nursing Manual, to be available approx March 2002 through PENS website www.pens.org. This chapter is written for endo nurses, but many families like to have medical info.

I am also updating our pamphlet for parents/families, and here is my question. I am aware that many families find the word "intersex" distressing. I am looking for ideas on what would be a better word. (Many years ago, CAH was called adrenogenital syndrome, but we changed the name to a more sensitive description of the condition.) Although "labels" are often undesirable, in the medical community some kind of "label" is needed to cover the category of conditions in which there is a difference in genital development either internal or external.

for your interest, the glucocorticoid instruction sheet that we use in British Columbia is on our website www.cw.bc.ca/endodiab and follow endocrine links.