Dear Sandra,

My Endo uses the term 11-hydroxylase deficiency in my case or 21-hydroxylase deficiency for someone else. This makes the most sense because it explains to other medical people exactly what is happening. If you say Congenital Adrenal Hyperplasia. After you tell them you lack cortisol, the first thing you will get from most medical people is don’t you mean hypoplasia? I don’t blame them for questioning me because hypo does mean lacking but of course it is hyperplasia because the adrenal gland thickens without the cortisol (I think, lol)

CAH is an adrenal gland condition and when I was in the ER two tears ago that’s how they were introducing me. "This is Aimee and she has an adrenal gland condition" and they were right.

I was in the hospital three months ago and I was trying to tell the nurse about CAH . Her response was "Why do you care so much about a condition that nobody knows about? You’re like me. " She meant well by saying this but she to focused on the genital part that some of us are born with and assumed I was ashamed. She missed my point that I was trying to inform her about a.) A birth defect that she knew nothing about and b.) having an Adrenal crisis may  kill you. I talked with another nurse and the first thing that came out of her mouth was " well...no one can tell ..." 

I could care less about being born with external ambiguous genitals even with the barbaric surgery OK part of it was good  but what really frightens me is that every time that I go into the hospital I’m the one that has to explain what CAH is and hope...PRAY that they are going to listen and  but there may be a time when I go into the hospital and I can’t speak for myself. My medic alert bracelet does say hydrocortisone dependent and is that going to be enough to help ?

When I was in the hospital two years ago, the admitting doctor asked me to explain CAH to him and this was a great doctor in a top rated hospital.  I hope that someday soon that I can say Congenital Adrenal Hyperplasia and doctors will know what it is and isn’t . Another doctor got CAH mixed up with Androgen Insensitivity Syndrome. I know that doctors have so  much to learn about many, many different conditions but I hope someday that the knowledge of CAH will be similar to Diabetes or Addison’s disease.

I don’t understand this shame or secrecy stuff. Nothing was kept secret or hidden, my parents told me everything that they knew in the time period that I was growing up. There was some things that they didn’t know and for that matter there was things that the doctors didn’t know. CAH was talked about as needed and I’m glad it wasn’t front and center all the time because it is only a small part of my identity and not my whole identity and that’s why I hate seeing CAHer or anything like that even though it’s meant in a good way. Any birth defect, condition or whatever is difficult.  I wasn’t treated any different than any other kid and I’m glad about that because I was then able to recognize that when people did try to treat you a "certain way" because you might have to take medication to make up for something your body doesn’t make that they are the ones that are uncomfortable and that’s why they act that way. I had a Grandmother that would pat me on the leg and call CAH "my little problem" which would perplex me as a child because CAH, 99% of the time causes me no concern but that 1% of the time when I’m lacking cortisone from being really, really, really physically ill that’s different. 

I can understand why people would ask if someone with CAH would grow out of it because don’t some kids grow out of having asthma? They don’t immediately understand the connection that we don’t make enough cortisol and never will but with the med we live a regular life.