Hey MarthaF.,

It’s OK ......it’s just those papers about CAH don’t get the "air time" or focus ...press .....put out there like this stuff. I’ve read what you are taking about also (I’m 35 and I’ve been researching my condition for the last 15 years)   but when it comes down to it and and the last one is darn fresh is that when you go into the hospital for something CAH or not ....it’s never been the CAH focus but the you were born like that focus and when will the condition mature past that - I go to major medical centers and this is what I have to deal with - the med staff isn’t thoughtless or mean bought have been trained condition to focus CAH in a certain way and I would love to see the condition move forward.  January - I’m on the floor and the nurse is waving her finger up and down going "you were born with a penis and vagina" yeah I did attempt to tell her about the prader scale but all she would say was "hermaphrodite" I tried to ask if they had solu -cortef ready to go providing I started barffing again but that was on deaf ears because I got "hermaphrodite, I’ve seen it all" two years ago in the Er trying to explain CAH and I need extra cortisone ..."Oh hermaphroditism and your pictures were in our books" the focus that this condition for the most part has nothing to do with genitals outside the norm for most with it and the fact that us born that way it is still an actually medical condition falls on deaf ears ...adrenal crisis and beginning scary part hypoglycemia. I don’t have any small hospitals out in hickville but rather major medical centers that pride themseleves on understanding ....ummm and while getting iron for anemia flat out told by a nurse that ambiguious genitals look weird .....I think this was the hospital that killed a kid with CAH. This was the same place that the doctors ( 1 female and 2 male) looked and then joked with each other that maybe the male doctor  helping me ? was actually a woman and they all laughed lets invesigate. The second male doctor came over to my cot and looked in real close  looking me up and down then walked away while the other male doc piped up at me to" smile" ok at aanother hospital a female nurse as I was being rolled in for a CATscan stated " check to see if she is male or female" and her and another female nurse had the biggest smile on their faces as the male nurse admonished her. So yeah ....when can this just be focus CAH and the rest sidebar based on the individual case?   DSD? oh you mean hermaphrodite unless focus shifts to Ohhh this condition actually is a hormone lacking adreanl gland condition and waht’s that you say ......these people can have adrenal crisis and she’s actually out of in because of hypoglycemia.

 

I have 11 hydroxylase and a doc told me good job nobody can tell- He thought I was a male ...and none of this bad doc stuff becasue with all the DSD - I don’t blame him.

 

When will CAH come first and really all this is a slap to males born with CAH and also to the majority of females  with just the enlarged clitorises. What other condition has a focus on the most rarest part.

Yes intersex is even classified as female on the isna board and cornell has CAH  as the major cause of intersex .....I’m not looking as to who picks what but rather when will the adreanl gland and how it functions be first because until then .....kept female pseudo -hermaphroditism secondary to CAH because that is what my records stated ...intersex... DSD is this generations expert  trying to make names for themselves rehashing the same old same old.