"It seems to me that the terms "non-classic" or "late-onset" are often applied to ANYONE who isn’t diagnosed at birth, with salt-wasting CAH. In fact, I think many of those people may actually be simple-virilizers.  In other words, they are may be late-diagnosed, but not necessarily have late-onset CAH. "

 

The question is, how do you define what triggered late onset???  It was obviously something that was present from birth where the adrenal glands are concerned.  Half the time, I just put it down to different levels of deficiency where the enzymes are concerned such as 21 Hydroxylase defieciency.  After all, you can be deficient in something in varying degrees.  You may have a daily intake of vitamin enough to keep you ticking over.  But is it enough to keep things properly balanced or to meet physical demands when they increase or for illness?  

 

You could have someone who has the same severity of LOCAH as someone else, but their onset is much sooner because their life has taken a different path where stress, bereavement and loss is concerned to set about the chain of events that involve stress response in the adrenal glands. 

I don’t think personally there is anyone "exact" example in any two CAH patients alive really--whether it is SWCAH or CAH.  When it comes down to it, the basic principle’s of treatment are all the same and to treat lack of cortisol and I guess all are prone to adrenal crisis.  Just the most severe types that would get the much more quickly obviously.  

 

I basically have had contact with all groups of parents who have children with all the different types and found the advice and interraction where CAH is concerned to be more than adequate.  The ones that have proved the most useful are the ones that are well up on all the different types, irregardless as to what type their own child has anyway.  If your round long enough, and hit message boards and sites enough, over time anyone would naturally have the ability to understand most basic different types of CAH and advise anyway.  I think basically we all have the same experiences to share but just subtle differences.  For example just because my son is diagnosed SWCAH at birth, does not necessarily mean he may never have issues with premature puberty at any stage in his childhood and that is the same for mild CAH and adrenal crisis.  Anything is possible in my opinion and should be taken on board.  My while philosophy has been that prevention (education) is better than the cure--any day.  In other words--knowing all that can happen and why can give you the edge where your child’s treatment and monitoring is concerned.