I should of cut and ran when this doctor proclaimed when reading that I put down 11- hydroxylase deffiency Simple Virilizing Congentital Adrenal Hyperplasia ..." "Wow! you really have this". He didn’t really do that much except stare at me , take my blood pressure, and the 20 bucks when I had the Blue Cross and Blue Shield.

I was some sort of mystery to him....he told me that I scared him. Which made me feel bad about myself here was a primary care doctor that I was supposed to have faith in - I was just a weird condition to him ...the CAH was doing well as it has been for 35 years but the rest of my body was falling apart- cancer, thyroid, intestinal issues but the doctor was stuck about the CAH.

I had a cancer doc do the same thing- talking to med students .... " I been in practice for eight years and I’ve never seen anything like this."

I an so sick of doctors not doing CAH right ...I didn’t get gang examed at that teaching university in Mich for nothing. 

I’ve had doctors turn pink when I told them about CAH.

My goal is Carol’s Book in the hands of every student at the local med school.

More than anything,I want docotrs once and for all to get CAH - I had another doctor confuse it with AIS.

I’m miffed Diane.....yes doctors need to learn a bazzion things but here you are as parents serving them up helpful info for CAH and they aren’t interested. Extra cortisone does a body goooood for us at least. Down here in florida, we all get this terrible flu....felt sick for awhile but took extra hydro and the ache went bye bye.

Props to the Adopted Mommies

I’m a cabbage patch kid too.