I guess there’s really two parts to your questions: life and death

As for life with CAH, it just requires a bit of discipline. Keep on the medicine. Keep an eye out for adrenal stress (illness, injury, etc.)  and live a healthy life.  Lots of people have mood swing that don’t have CAH. Lots of people have weight problems that don’t have CAH. Both, with a CAH person are generally caused by the wrong medicine levels. You work at it from both sides. Correct the meds but also learn self-control.

As for death, keep on the medicine. Keep an eye out for adrenal stress (illness, injury, etc.)  and live a healthy life. almost every CAH death I’ve heard of came from some one not giving the meds at the right time, whether a babysitter, the person themselves because they assumed they had out grown it, or because the family lived too far away from the hospital.

We all experienced the same panic early on, then eventually learned the importance of consistent discipline, and have grow a bit more at ease. When Jonathan or Ginny get sick, we still get very concerned, but we pretty much know what to do, and do it.