Okay, I guess I must be feeling particularly schizophrenic today.  Just one more thought on this subject.......

 

I think having information is extremely important, but even more important, sometimes, is knowing what to do with that information, once you get it.  I guess that is the real point of what I was trying to say earlier.  For example, say it is true that some of the traits that we carriers have are, in fact, due to our recessive gene for CAH.  Does this mean that all carriers should, therefore, be recommended to go on steroid replacement therapy for their symptoms?  I would argue "no," but I can see where many people might be led into thinking that they should be---and this is why I think we might want to proceed just a wee bit carefully here. 

 

People with proven CAH have cortisol levels low enough where lack of treatment would cause problems that far outweigh the negatives of a life-time of steroid medication.  In those people, I think, it is right to treat the problem at its root, which is to replace the cortisol that they can't make.  That may not be necessary, though, for those who are only carriers---even if their symptoms can eventually be traced to CAH.  Since carriers do make enough cortisol to get by---and becoming steroid dependent is not something to take lightly---I think it could be argued that many carriers might be better treated symptomatically, if they need treatment, at all. 

 

Take my daughter, for example.  In fact, I do believe that her dark coloring and "mustache" could be due to her being a carrier of CAH.  There is really no precedent in either my husband or my own family for her having those characteristics, so it seems like this is more than just coincidence.  On the other hand,  does this mean that I want her on steroids for life, to "fix" those things?  Of course not!  Her naturally tan skin has gotten her compliments her whole life---so in many ways, it is actually an asset---and a little bit of Nair works just fine on the facial hair.  And would I have considered "treating" her to delay puberty?  Again, the answer is no, in her case.  Ten, almost 11, is on the early side, but not unnaturally so, in my opinion.   So, even if it could be proven that my daughter's carrier status was at the root of her "symptoms"---giving her steroids to correct her "problem" is not something I would ever have thought to entertain.   In her case, the "cure" would surely have been much worse than the "disease" itself. 

 

I guess the point I'm trying to stress is that while I feel that information is always good, I would only caution about the possibility of jumping to the wrong conclusions with what we find out.  Since this is still a murky area---with no clearly defined guidelines---I do feel that we need to tread a bit carefully.....  otherwise we could be taking information and running with it, even before we know exactly where it is we are supposed to go.