A few years ago it looked likely that we’d discover a drug that might be taken prenatally by mothers whose children might have a high risk of CAH – in order to prevent it.
Since CAH is the only intersex condition that can necessitate medical treatment, and specifically might prevent an “adrenal crisis” that can be life threatening to a newborn with CAH – this development could have been a good thing.
Except that it’s off-label use it intended to prevent lesbians and tomboys. And career women. Depending on how exactly you’re going to define female masculinity.
It’s nice to see Slate finally reporting on it, despite the dumb-ass & sensationalist title of the article, & I’m hoping that means this question gets put to a much wider range of parents and potential parents.
Here’s the paper by Dreger, Feder and Tamar-Mattis.
Here’s a summation out of Northwestern.
It doesn’t “prevent” CAH, nor does it do anything about the adrenal crises in 21h CAH, the most common cause of it.
It prevents masculinisation of the neurology and genitalia, that’s all. No effect on the adrenals, they remain hyperplasic, with all that entails. Adrenal crises still happen.
CAH isn’t the only Intersex situation that can require medical intervention, but is by far the most common. ~95% the 21h form, ~5% the 11b form, <1% all other forms put together. When an article mentions "CAH", it universally means the 21h form only.
I have CAH BTW – apparently the non-SW 3BHSD form, which has highly variable effects.
Zoe, thank you so much for the clarification. It’s not my area of expertise, but it is terrifying.
I was under the impression that it was the adrenal crises that spurred the interest in doing research – with an eye toward prevention. No? Obviously that’s not what happened, but I thought it was one of the goals early on.