CAH Survivor (January 2005)

Re. #1: I don’t know why many doctors are so adverse to saying, "I don’t know." Personally, I have no problem with a doctor admitting that he or she doesn’t know the answer to a question...I fully realize that medicine does not yet have all the answers about CAH. Yet, when a doctor avoids the question or gives us the "wide eyed look," we are left to fill in the blanks on our own. If you are like me, this means that you usually assume the worst....both about the doctor and about the answer to the question! I think so much of this could be avoided if there was simply better, and more honest, communication among all parties involved.

Now, a question for you and all other CAH adults...and I guess this also speaks to your observation #3: I know many people are fond of saying that treatment for CAH has changed greatly in the last x-number of years and that, with greater knowledge, today’s generation of CAH patients should fare better than those of earlier generations, such as yourself. I am not so certain that I really agree with that. The way I see it.....fifty years ago, people with CAH were treated with glucocorticoids. Today, they are still treated with glucocorticoids. So, to me, treatment has really not changed all that much...fundamentally, it has remained the same. The only thing that has really changed is the amount of medication that is given. Years ago, it seems that everyone was overtreated. Today, many doctors seem to favor undertreatment.

So....my question(s) to you and other CAH adults is this: If you had to pick, do you think it is better to slightly under-suppress a child or slightly over-suppress a child? Do you feel that some of the problems that you face as an adult are inevitable, no matter how well someone might seem to be doing in childhood? Do you think that increasing health problems/failing health may come with the territory of having CAH and/or being treated with glucocorticoids?

I realize that there are no definitive answers to these questions, since one cannot turn back the hands of time and do things over to compare outcome. I am just interested in your opinion about this....whatever you can and wish to share with 20/20 hindsight.