Hi Matt,
How are you going to make sure that someone actually has CAH? Could you please answer this one?
I could be someone that landed here from the solar system siruis and fancy that I have CAH along with enjoying Rasberry Jello.
I was disapointed that you didn't answer my post on the other board as those were experiences in my life that I would of liked you to comment on and I poured out my heart to you on all that and you didn't even bother to respond- I PUT OUT my experience and got silence back. Why on earth should ANYONE TRUST YOU !!!!!!!
You sounded hot on the phone and good luck with everything. It's to bad that you can't ....ummm pay us something like $250 for talking with you and that isn't unresonable because other times of studies do this. Heck if you get stopped by a survey taker in the mall
even they offer $5 to 20 bucks and other types of places offer more.
Anyway - good for you for getting into the mix and I'm still trying to find someone to explore if I have cyclothemia but all they want to do is chatter about CAH for their own curiosity on my dime. Plus, I know that for sure that I have lupus ....test results ....who needs those.
Maybe you would like to put your survey out here in open forum?
Also, Please go to the
http://caresfoundation.org as that is an international organization for CAH that could help you.