Hello:

The people that I listed at the end of this post might also be persons of interest to you and could explain why the interest for CAH for people like themselves and the above reseacher. It is upsetting that CAH is used in this manner particularly when you don’t agree with it or identify with what their findings are and to quote a phrase that really should become a CAH thing like "McDreamy" or "McHottie" on the TV  Medical Soap  Grey’s Anatomy ....." It is what it is."

These people find ones that they need for their studies or those people find them and conclusions are then made which might not reflect the whole condition orthe people that have it but researchers like the above will draw from it. I think it is great that you are trying to speak out and I wish you well with that. I tried to speack out also to the people with in CAH that matter but whas deflected minimized on every turn. Basically THEY  are the ones that matter and trying to get a whole picture of what the condition is or please don’t use this condition for other things isn’t something THEY want to here about. Good Luck with the writing and I hope it helps .....maybe it will if enough people do write : )  I don’t relate either to the all the articles or they might be on the right track but just not quite there in some of them. I also think that some of research articles/studies that very well might be true for the small population that is being studied puts others with CAH in medical danger because the doctor might not be thinking to look for something or down right blow off  because of what was written. 

I’m off to buy coloring books for my neice and to window shop at the Swarovski Crystal Store. Try not to let this stuff get to you all that much Ok?  when I was a kid : ) I wore cowboy boots and played with a cap gun ....it was sooo cool and these type of people would eat that stuff up but the fact that my girlfriends that didn’t have CAH also had cap guns and wore cowboy boots  wouldn’t be of interest and isn’t worthy of a paper....lol.  This stuff will give you a stigma and that happened to me but by your writting then maybe some of this will eventually stop. I look good and I am just as comfortable in a black dress and pearls as my combat boots, t-shirt, baseball cap, and dirty jeans. I think when papers try to write and use CAH that they are tryingto bild up the point about their subject and what it really feels to have the condition for everyone isn’t a concern.     

From my own experience - The frightening part is when you go into an ER or another doctor visit and need help for CAH or something else that may kill you  like geezz let me pick .....the cancer that I had, the touch of pancreautitis (sp?) this virus that comes and goes in my throat ...whatever that you have to be the one that does the damage control to save your life. I had one Doctor with no nelgect intended actually confuse CAH with Androgen Insensitivy Syndrome and my prior GP, a good doctor also but had no idea that a woman with CAH could have a period. Are these Docs Bad? no but they just didn’t know what CAH actually is and then with all the other stuff that is written .......Ohhhhh and then the time I was at an ER with a good doc also but lacked in the knowledge of the condition upon me telling him that I had Congenital Adrenal Hyperplasia and took prednisone at the time asked me ...scumm nothing me ......"ummmm so why do you need the prednisone?" I stated for the CAH and adrenal insuffiency : ) besides helping the adrenal gland function every day. He smiled and did his Doc thing and the nurse brought over everyone with she has CAH and adrenal insuffiency - they were happy to learn but another time last year I was in the ER throwing up and wanted to be good so I went along with a third year med student doing the work up - he was cute and nice and I wanted to give him a shot at helping me. I told him that I had CAH and did he know what that was? He said, "yes" and then I told him that I came to the ER because I was throwing up and went so you know about CAH? he then asked me if I had any "female issues" .....I wish that  ordering me up some solu-medrol would of be on his mind but really not his fault if he hadn’t received the proper education about CAH and I happen to know from insider infomation and a few Coronas (beer) the small amount of time spent on CAH education at his med school was all about the surgery controversy and it was a blip compared to the things they learned about Diabetes.    

The thing is that these Ph and D people are going to on about what  does it for them for CAH regarless of the all the people that have the condition say for example they aren’t going to be interested in the thoughts and habits of hetrosexual women with CAH if for whatever reason the portion of women with CAH are their interest. They aren’t interested in women with CAH that have a deep concern of blond or red highlights for my hair ? I’m leaning toward the blond again. They don’t want to hear about women with CAH that have kids or even like kids because it isn’t their personal interest. They like to study the small amount that want to leap genders becasue maybe that will explain why others without CAH jump genders ? they aren’t interested in the women with CAH that are fine with their gender or have a large gender expression or have this deep seated need for lip gloss.

 

Susan W. Baker,Ph.D

Psychoendocrinologist  and co - author of the article "Psychosexual Quality of life in Adult Intersexuality : The Example of Congenital Adrenal Hyperplasia (CAH)." .... 

Is on cares foundation scientific board http://www.caresfoundation.org along with this person.

 

Sherri  A. Berenbaum, Ph.D - Psychologist

http://www.personal.psu.edu/sab31/ 

http://www.personal.psu.edu/faculty/s/a/sab31/cah_info.html/