Congenital Adrenal Hyperplasia

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re: re: I never played with GI JOE Main Archives Page2004
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re: re: I never played with GI JOE
Sep. 20th, 2004   12:31am

When the medical establishment sees on my records pseudo- hermaphrodite, ambiguous genitals, and various genital surgeries the fact of CAH doesnít matter and I tend to get treated a certain way. The staff coming in just out of curiosity and suddenly getting switched to the head nurse because she has never seen anything like me or having a nurse say youíre like me nobody can tell (thinking Iím shamed atthe way I was born). The doctor with big curious eyes stating, "Wow, you really have this!" and then going back to a glazed over normal when he realizes sheís not such an interesting case after all. I had a nurse more interested in telling me that it says hermaphrodite in my medical records than concerned about my catheter. She went on to say that she saw pictures and read articles about hermaphrodites and I thought about telling her the difference between true and pseudo hermaphrodites and I made an attempt to explain to her that not everyone with CAH is born with hermaphrodite characteristics of the external genital area but the most important thing is that someone with CAH lacks cortisol and needs solu-cortef in an emergency situation. Yeah,Yeah she said but I doubt that was even a concern because she made a point of saying that Iíve adjusted well. I thought why did I need to adjust because there was nothing wrong with the way I was born but she assumed I thought otherwise because of what she had read.     

I donít believe in the labels because it hasnít been my experience and it is the experience of someone with CAH but it seems so one sided as the above posts show and where the problem is for me because other medical people read those articles and my health was disregarded until I had to not only faint but beg for help with my real medical problems.

 I donít label or assume anything about anybody and someone with CAH in my experience has to diffuse labels to get any real help. Another assumption that doctors make is that CAH/ genital ambiguity is a trauma to the child. I had a prior Endo tell me this and Iím like ...helloooo ? ... I was the child and I could spell pseudo hermaphrodite by the time I was ten and the word made sense to me about how I was born. Does that seem like a trauma?

The doctors spin their labels and make it harder to get treatment because you are a curiosity first from some obscure study and that is always up front before your medical concerns are even addressed if at all. Your real problems are missed that may kill you but they realize that you arenít a freak of nature after all (good for them and bad for me) . The labels start about the girl and boy toys then go from there. Does any other condition have to go through this type of crap? I kinda went on a deeper level but itís all connected.

Peace,

Aimee

aimee

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