Several points here...but not too long, I promise:

Ultimately, breaking down the shame and secrecy of our bodies will further all treatment aspects of CAH.  Even in this day, parents and patients are not told the complete truth about their conditions, and what has been done to the their bodies.   CAH is a serious medical condition, and it is a condition that affects females and their families in a very profound way.  Many here say that part of CAH isn’t an issue, yet they still admit to keeping it a secret from close friends and relatives!  Why?  What is so shameful about it?

When our genitals truly do become a non-issue, and something that doesn’t need to be "fixed", then perhaps more resources can be put into the medical side of it. 

If you think that the medical side isn’t ’covered’ enough, then do something about it instead of whining here.  Donate to CARES for instance---Kelly has done wonders as a patient advocate and it affects everyone here. 

If you think the shame and secrecy is horrible (and it does cause damage), donate to Bodies Like Ours and help us eliminate it by providing a forum for peer support.  Some of our members have grown from never telling a soul about their medical condition to actually speaking publicly on the issue! (shameless plug :-) Heck, stop by our website and read the real stories of people who survived the same shame and secrecy you are perpetuating when you say this aspect isn’t newsworthy or that you don’t talk about it.  Not all there have CAH, but the effects are the same. 

Those who think it is better not to talk about these things are truly living in denial. 

Devastated, I live in a really small town also (we do have one stop light however!)  Does that keep me living in secrecy and shame?  It doesn’t and in fact, I’ve given handouts and impromptu lessons about what who I am often.  Even the postal clerk at our little post office has received a handout.  I don’t always wear a badge, but people being people, are curious and when someone asks what I do for a living, they get a reply that I can guarantee they weren’t expecting.

We use magnets sometimes as handouts which I print at home.  Murphy’s Law being what it is, I will invariably have sheets of them drying on my fridge when I get a plumbing emergency.  I could live in denial and brush the question off, but I don’t.

Even with all my openness, I never once have been harassed for it.  Not once---my home office number is on the internet, and never once have I received a crank call. 

Betsy

http://www.bodieslikeours.org