Congenital Adrenal Hyperplasia

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Kerry, Danny, and others Main Archives Page2003
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Kerry, Danny, and others
Jul. 31st, 2003   10:29pm

Danny, Susan, and all those that have written emails to me...thank-you.  I know it sounds a bit odd that I would be thanking you, but this became an odd situation that I struggle with on a professional basis and on a person with CAH basis.

Kerry, I hope that this doesn’t scare you off from posting further.  I think we have a lot to learn from you.  There are many parents wondering about their daughters here---surgery or no surgery---who would benefit from what you have to say.

I myself, will likely learn quite a bit from you and I had hoped that I got that across earlier in this thread.

As an activist/advocate in this area,  I talk to many people from many different backgrounds.  Believe it or not, I sometimes spend hours thinking about what people say/write to me.  Sometimes, I even wonder if my activism on the surgery issue is right.  The more I think about it though, the more I know that it is right.  It has to do with basic human rights and control over what happens to the body that you own, no matter your age.  I’ve become quite interested in the area of bioethics recently and am even thinking of going back to school to get my masters (or even PhD in it *gasp*  It’s one of those things I see as important right now in my life; probably not unlike you seeing your need to ’correct’ me with what you see as wrong and faulty in my advocacy.

If my activism is correct, a girl with CAH may grow up hating me because of it, but in the end, she will have been given the luxury of choice over her body and what happens to it.  Genital surgery is something that has lifelong consequences and being that it is cosmetic, is something the girl with the body should have a say in.  It also cannot be undone.  Once a clitoris is changed, it is permanent.

In that same vein, I really would like to know your story.  Surgery or no surgery?  I’m particularly wondering what has made you so angry. 

Kerry, as CAH women, we are really in the same boat.  I’m having some health issues that the doctors are clueless about and I never forget that as I and my docs  try to figure them out, it will help people like you.   Likewise, your story can help people like me.

Betsy Driver


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