Dear Ms. Eden,

This nurse just wanted to share that she knew what CAH was based on her experience and voiced that she" had seen it all " in her own way? I think she was trying to make me feel more comfortable and she went on to also talk about des babies which I guess shows a similiar presentation at birth. I’m not a nurse but she wanted to chat whereas I just wanted my hydro and sleep.

 Another time and this was another hospital and ER- the head nurse came to do my history at the end while i was waiting for a room. I got excellent care and the nurse was real and nice but I was there because I was dumped by one hospital with a mass that was later cancer and the cathader had broke off in one part and the gauze that the first doc stuck back in was growing to my skin - the head  er nurse goes I’m to take your history to save time for the floor nurse and then knowing that I had CAH from records that were pulled up .....she mentionedright of in a sincere voice about seeing pictures of hermaphrodites in her text books back in nursing school again I got excellent care but when I brought up the adreanl crisis part she really didn’t know and I feeling ill because of the cathador issues had to expalin that way back yes the word pseudo- hermaphrodite was used to describe physically how a small percent of girl babies w/ CAH are born and we lack testes unlike true hermaphrodites that have a smear of ova/testes. This nurse was cool and was like right ..right but why me? the sick person for nothing to do with cah had yet again explain ...I would love for the novelty of this part of the condition to wear off and why should any part of a condition be like this  and really I’m the  idiot and feel stigma for being "on stage" explaining .......I’m like going on most girls are just born with enlarged clitorises and boys can have this condition as well .....I bring up how kids have dies from adrenal crisis but it’s just the Oh seen pictures of you in school and she used the term that she learned in her time period which was psedo- hermaphroditism secondary to CAH but todays term would be more toward ambigous genitals. This head nurse from a major medical center was the one that also pushed chunky me and the bed all the way up to the room instead of the transporter and she also mentioned she come up and see me. If parents need to shelter their child/teen from the way they were born? It’s not for me to say waht is right or wrong about that but there is a good chance that theu are 1) going to find out more about CAH from a medical person that in their heart really means well 2) Send for their medical records in their 20’s because they feel like something has been kept from them or they are just curious. Yes. parents should be the ones to tell if that is what they decide but I have no idea why or how but it should be the parents and not some  flippin Ph and d  becuase if it doesn’t come from your parents first then one might think that your parents are ashamed of the way you can into the world.

At yet another hospital, I had another nurse tell me that the way I was born looked weird and even from here ...got a message from a parent that went the way I was born was "Ewwww gross ........."

I used to read my medical records when I was ten and waiting for the endo and his posse.

People aren’t perfect and do and say the wrong thing even when they mean well. I think if this condition was more well rounded in the way it was presented then it could take its place next to the other endocrine conditions. 

aimee