The other conditions aren’t life threatening because of the adrenal gland.

I’m in the hospital trying to tell the nurse about having more cortisol and she is pointing her finger down and back and for saying I’m a hermaphrodite born with a vigina and penis sooo like that is some sort of embarassment to me - I tried to tell her about the adrenal gland and the term actually was pseudo hermaphrodite because true hermaphrodites have overies/testes where this is a problem that came out of an adrenal gland condition.

On can go blah blah ...errors of sexual differentation and the charge nurse when you go in for something else will still go we read about hermaphrodites in our textbooks like with I told her about the ambiguous genitals and the surgeries that were done to me.  She was mean about it or rude but jsut saying what she had studied.

Error of an adrenal  gland lets label it that and advancement will come. Becasue other than that it will always be a curiosity ....an odd condition.

 

Got into an ER w/ CAH as intersex or Errors of sexual developement and good luck explaining adrenal  crisis if they haven’t seen it before .....I’m throwing up asked the new doc if he knew what CAH is ....yes he said only to hear  him and the female and male docs laugh about maybe the one male doc could be female and that all should investigate - The one doc looked at me and said "smile" - I realized no help here.   

Martha....I like you and I think you know that I do but even though you do carrier the gene for this and your child is born with it ...so you do understand to an extent but you weren’t born with it.

i was looking in a ped endo journal that went on about being a hermaphrodite from CAH. The person was born higher on the prader scale and it wasn’t found until later and was functioning as a male ...none of this enlarged clitoris stuff ....geeez should of been so lucky but the thing is ..that is the word they used and this errors of sexual developement is just one label taped over hermaphrodite and it really doean’t matter because at three in the morning when all you want is hydrocortisone for your adrenal gland to function the nurse will focus on hermaphrodite and not because she is being rude or mean but it just is waht it is and she’s seen it all.

Errors of sexual developement? So....what are those errors ? born with a vagina and what looks to be a penis ...oh you mean hermaphrodite. The adrenal gland part yet again gets swetp under the capet. I had emergency surgery - another life time ago now and if it wasn’t for my insistence would never of gotten my solu- cortef - so glad that I was awake to aske the nurse and be persistent. The nurse said " They’ll know but they didn’t know and thanked idiot scummy me for bringing it up to these smart educated people. Saves their a*** and they were able to save me for another day.

If I had a son or daughter (enlarged or smaller clitoris ) with adrenal hyperplasia, I would consider all this focus on the one area for the minority of people with adrenal hyperplasia a slap in the face for the condition.

Why isn’t this condition next to diabetes or thyroid?

Pseudo hermaphrodite? i knew how to spell that when I was ten and that was specific to my case and some othres but not all with CAH. How wonderful it would be if the adrenal gland condition itself was more of a focus as it relates for system functioning.

I brought CAH up to a shrink and she goes "Oh, you mean transexual"  no, mental health doc...this is an endocrine condition but until it’s treated like one and again docotrs work for us and thye spend their lives learning about the people with conditions - If you don’t like any of the labels or find them incorrect then say that to the experts ..the people that matter. I’m a smuck ...mean nothing and those experts need those names to make carrers and niches for themselves hermaphrodites...pseudo hermaphrodites ....no can’t use those words anymore ...intersex *rap nobody gets that and errr that intersex person doesn’t look intersex soooo yeah yeah Errors of Sexual Differentation .....mysterious and all encompassing that one ...we smart  .....whatever ..it’s all BS. I feel used.

You should of heard me with my Endo : )  me:    I’m a hermaphrodite                        Endo:     You’re a girl            me: I’m a hermaphrodite                                            Endo: You’re a girl!!!      me: OK, female pseudo hermaphrodite 

and if you want CAH to move forward to a condition as one put it " very managable " then consider where  the cah community really wants the condition to be. The Doctors work for us and not the other way around.   

The focus on  errors of sexual developement for me is like consentrationing on the end stop of a train instead of the focus of the first stops and how those first trains were created.

Or if one wants to say it’s an error and who is to say looking that way is an error? and how about the error lies within the adrenal gland and that seesm where medical focus could advance this condition.

Just a female pseudo Hermaphrodite or if one ever wantsto get modern for real with the condition. A female with and metabolic endocrine condition- a defect of the adrenal gland- nothing more or less.

All those other labels gives people in Ivory towers something to fed on whereas the average cool Er doc would been wow - that odd condition could actually kill someone ?%^&%*4 get her solu cortef quick!

i had another doc that asked me if I was actually female ......"you’re female .....right?" and yey another that thought I was male ...".good job.... nobody can tell"  

We sit here with all the other condtions when striking out making a distinction of what the condition is and how many males and females actually do have it then maybe it would help CAH.    

I lack the ability to make cortisol and that isn’t any different than the fact I need synthroid for my thyroid gland because it stopped making those hormones also. Why this adrenal gland conditions put in with other endocrine conditions.  

Errors of Sexual differentation or as one parent emailed me stated " ewww gross chicks with d#### or as a condition and the community that knows about it can pull forward and only accept that this is an adreanl gland condition first and for most is the focus ...yep how I was born but not how the majority is and brother doc there sir darling can you help me with an adrenal crisis or make sure sweetie that I get orders to have double hyro during my stay ....could you cute stuff  not say that cah SCARES YOU and jsut get a little more educated so my Endo doesn’t have to carry that load because he feels used and has enough to worry with all the diabetic patients ...love you doc I’ll buy you some Jack Danials...  they are so focus on this is some sort o sexual condition that the medical part ....geeez maybe hypoglycemic here isn’t considered but looked at instead as some oddity. "You do menestrait? .......ohhhhh" Maybe the best if we aren’t seen next to diabetes or thyroid conditons is to stand alone then.

I ain’t no error - my brain is wired in utero without a cap on androgens...so then you alll be saying that I’m a walking talkin error  all the way around.