Congenital Adrenal Hyperplasia

ATTENTION MEDIA & OTHERS SEEKING INTERVIEWS! 
If you represent a media company, are a student writing a report or anyone interested in interviewing our visitors, please seek permission (see email address at the bottom of the page) before posting your requests or emailing solicitations for any talk show, magazine, thesis, census or other interview on any message board on this site. If not, your posts WILL be removed. Please respect the privacy of our members.

    Return to Page 9Post reply       


re: Curious: What was the reaction of you or yourDr when you saw your daughters unique anatomy
Jan. 11th, 2005   11:51pm

Did the baby have CAH? and WHY are you curious?

Maybe they didn't say anything because she looked big to you but they've seen bigger also they've been taught not to say anything negative in the room. Big is one thing but ambiguous or looking externally male is another.

 

They don't do clitorectomies anymore (that was done 30 years ago, today reductions are done if at all) and with respect but some of us with CAH are born with a completely fused labia and the urethra running through the clitoris. Gender undetermined until further testing and sometimes we are sent home mistaken for boys until we get dreadful ill and come close to death.

This is when they go back to the hospital to discover that the little boy that they told everyone about  is really a little girl with a genetic birth defect. "If it ain't broke don't fix it"???? so you feel my menstrual cycle should of been forced to go through the urethra that ran through the phallus??? because it wouldn't of made it through there.

"The little girl's blessing is a family trait, go figure." CAH is a family trait that we may die from. The enlarged clitorises which doctors are leaning away from surgery about, the ambiguous, and external looking male genitals are due to a defective adrenal gland lacking the ability to make full or partial cortisol WHICH IS NEEDED in times of physical illness to survive.    

Anyway, the way you wrote seemed really sweet but I just wanted to give you more detail.  

aimee




    Return to Page 9Post reply       


This Thread





- Post a reply - 

page processed in 0.387098073959 seconds
Rare Disease Search Engine, Homeschool Sites, Online Homeschool, Online Income, Ethical Adsense, Creative writing, Family Web Hosting, Christian Radio, Tulsa Parks