I'm trying to write this in a way that won't upset you but I think it's sad (I'm being nice here) that you've only taken an interest in the ambiguous genital part of CAH considering that part only affects a % of girls to the extreme and you don't know about the rest of it with considering your education. Knowing about the metabolic function might actually help someone but looking just at the pictures? It creeps me out that being born the was that I was will always be someone's morbid curiosity (no offense meant to you) but you are the perfect example of why picture taking should stop. I really feel nonhuman after reading what you had to say.
In your second to last paragraph you go on about " the surgeons told parents that gonadal tissue was removed ...." Why are you bringing up something that happens w/ Androgen Insensitivity Syndrome? this is a board about Congenital Adrenal Hyperplasia are you trying to merge the two? Each condition and case involved is different.
Little girls with CAH only have female chromosomes, female sex organs w/ NO male testes or tissues. CAH is because of a metabolic deficiency in relation to the adrenal gland. Do you know what an adrenal crisis is? or care that we may die from that? Little boys are born w/ CAH to but that isn't as interesting from your point of view how many little boys with CAH had to die because CAH wasn't picked up and they were thought to of had SIDS. I've read that men with CAH are actually well endowed because if the excessive androgens in utero.
Having any condition is rough especially when the doctors are learning about it themselves. I have a few cracks in my psyche because of it and my cancer was missed until I fainted because instead of listening to me the doctors were more interested in the CAH and the symptoms from the cancer were blown off as I was told to tell them about the CAH because they've only read about it and instead of doing their job to investigate, it was my job to explain CAH to them . I've always been a tool, a curiosity and when do I get to be a human being ? Doctors didn't mean any harm and actually did what they did to help me. I hope that you can realize that too : ) I'm amazed at the progress medicine has made w/ CAH since the 1930's and here is to the future. Something that a surprisingly nice, humble, and of course smart Doctor once told me that "medicine isn't always right but it's forever changing" they were doing what they thought was right during the time period based on their training and I don't think they need to be made into villains.
Wow! 1995? I was in college also but I was out partying the night away with a hot fire fighter from NYC. What fun that was and I can still remember the song " BigE, BigE can't you see sometimes your world justs hypnotize me"
Your 2 cents about the surgeries is just that because you don't have a child born like that. The Endocrine consensus from what 2003 does recommend leaving an enlarged clitoris alone for the patient to decide so things are changing in that regard and the top surgeon that works for us (man o man would you ever believe that there would be surgeons that put us at the top of the list? now that's progress) leaves enlarged clitorises alone and helps someone born like me because let me tell you that yes the surgeries done way back when were archaic and I'd slap the surgeon across the top of the head but I'd also thank him because not having the surgery would of left me in limbo hell and that even though I wasn't bothered by what I had as a five year old, having a period through external genitals that was a phallus would of been even worse. Parents make choices because they are the parents and doctors make choices based on their training to give THEIR PATIENTS the best life possible. "We're one but we're not the same ....we've got to carry each other." U2 Bono Many choices but in the end support for all.
I think you mean well but just to focus on the on genital part hummm how about coming up with a drug that has less side effects than the cortisones?
TAR = RAT= Aimee
