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Great to get your post and I have a day off here so I'm having fun on the computer. I'm a really broad minded person and "should' really isn't in my vocabulary.
I have no message but just my own experience of living with CAH. I don't like this fragmentation and devaluing of what other w/ CAH say or the devaluing of what any parents says either.
The house that CAH is building has many different rooms and for me all need to be considered : ) I get offended by the word intersex but in some ways not like how all of you do in my mind. If people would like to see CAH advance forward in being next to diabetes then more people must voice these concerns to the appropriate doctors and not just dismiss this as all something hatched from crazy lesbians : ) I WROTE THAT with affect to a CAH sista who is getting her voice known and never objected others putting theirs out there. Besty you GO girl and Times magazine, TV, NY TIMES. When the book comes out? will you sign my copy : )
All you get is I don't come to the board it's negative and I'm not intersex and how dare they say that well then write to the AMA or a Urology Journal and tell them how you want CAH to be used. The word female pseudo hermaphrodite secondary to CAH fit my particular case and not everyone with CAH would fit into that either but along comes the ISNA and they don't like the word so it's tossed. I was really impressed that the victorian doctors studied and could make the distinction between what is a true hermaphrodite and a pseudo hermaphrodite. I like to study the progress of medical history but that is just me. I wrote to the Isna but was sent a form letter back when it came to CAH and the term Intersex but at least I voiced my opinion. When Eric Villian wrote about Intersex and CAH is under that umbrella, I wrote to the ISNA when they had an open part on their web site and they took it down. I wrote about people with CAH get married and have their partners children and for whatever reason it was deleted but at least I wrote, I'm not knocking what anyones saying but I want the whle picture of CAH out there. Other researchers write about people with CAH having psychosexual problems and then other docotrs don't even want to approach that subject and gyno cancers aren't even considered. Let's not go there we don't want to be the one to cause more trauma. Trauma genital exams as a child make you an expert then try to go to a shrink to talk and they think this has something to do with trans gendered?
I find somethings the ISNA write exteremely worth while but I ALSO THINK SOMEONE LIKE ME is being used to promote other agendas even though on there own I don't disagree with those agendas : ) I'd like the study of CAH move father like what other birth defective are people with CAH more prone to? Autoimmune disorders--Celiac Sprue, Thyroid-- Hashimoto, MS, Lupus? and how about what does taking long term steriod use do even at the amount we take? and yo like I MEAN FOR REAL does it lower the ability in the body being able to fight off viruses but also keeping an eye on the issues that this birth defect seems just stuck at. Hermaphrodite! I've seen pictures of people born like you hey I don't want the old charge nurse that looks upon me with surprise hermaphrodite! You've adjusted well she meant well also but when i tried to tell her about well this is an adrenal gland condition and it's because of the cortisone she glazed over again female pseudo hermaphrodite = adrenal genital syndrome= Congenital Adrenal Hyperplasia =prader scale= boys that died from sids have this = 100 of100 people have LOCAH and don't even know it. I think if more knew about LOCAH knew about LOCAH then it could really help CAH in general.
It was a doctor that came up with the word a long time ago. I've seen the term intersex used in Endocrinology journals and Cornell uses the word in the link I provided in another post. The doctors on the ISNA board are from everywhere but people only diss about a report from SanFransico? My parents made the best decision for me having it done at age five but that might not be the best decision for someone else in their family structure. On this hand this could happen or on this hand this could happen and parents of course take that responsibility. I'm trying to offer support all the way around. I get concerned when I read we are doing the surgery so they don't remember and I know of more than a few kids that needed more surgeries and those kids are in that childs age group also. There are no absolutes and that way you aren't caught off guard.
I come here for support/education myself and what I really like is the religious vibe i get here.
