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re: Intersex terminology
Jul. 11th, 2005 9:30am

I contend that we in affluent countries are looking at CAH through a rather narrow lens. A lens whereby the institution of treatment upon diagnosis is the norm, thus essentially halting further virilization and androgenization in the CAH individual. This possibly colours our opinion of CAH as it relates to being an intersex (or pseudohermaphradite) condition but we need to look beyond our own shores and to another time. The above treatment regimens have not always been the case in our affluent countries nor is it still the case in all countries in our world today.

Professor Garry Warne in an article entitled CAH: Long Term Outcome Studies says:

“Throughout most of the developing world, patients with CAH are in a wretched state due to poverty and ignorance, including poor medical knowledge, inadequate laboratory support, and lack of appropriate, affordable medications”. He also refers to CAH as being (in these developing countries) “a burden of misery” and “the situation for patients with CAH who live in resource poor countries remains dreadful.” Professor Warne refers to a not uncommon occurrence when he “met a 27 year old 46XX man whose CAH had never been treated” but who had to negotiate “his own female-to-male transition in early adolescence.”

So whereas ambiguous genitalia in a newborn in our affluent countries remains a huge concern, in the past this was only the starting point for further virilization. Providing the child survived, a female child would progressively virilize to a point where they often had no choice but to transgender. So for me it seems that a medical condition which in its untreated state causes a female to all intents and purposes to appear male to the onlooker by the time of adolescence or adulthood is an intersex condition. This appearance does not only include virilized genitalia (which most people don’t see) but facial hair, male habitus, deep voice (Adams apple), muscular build, absence of secondary female characteristics such as breasts, amenorrhoea….I simply don’t know what else you can call it!

Therefore the question I ask is; does the institution of treatment in CAH and consequently the prevention of the rampant virilizing changes, essentially alter the fact that CAH is a core condition of intersexuality? Just because we ‘fix’ everything up either surgically or by medication does this mean that we can deny the ‘nasty’ implications of this condition?

CAH is a whole of life issue. CAH is a progressively virilizing condition if we are not vigilant - what other women have to contend with this?

I do not propose that I am right but these are just my thoughts as I try to sequentially make some sense of the whole range of intersex disorders, not just CAH.