I was just diagnosed with Adult Onset CAH on Monday.  I kindof wonder what’s so adult about it because I have had the symptoms since I was a baby (I couldn’t go out in the sun because I would get very ill).  Anyway, I am scared because I have no idea what I am dealing with and my doctor had no real information either. She is an endo but said "I heard about in med school but since I’ve never seen it, I forget what it is."  Needless to say I see a new endo tomorrow morning.  What should I expect?   Will I ever get better?  Will I have to take meds for the rest of my life?  What would happen if I don’t?