Reading this strand has certainly brought back a lot of BAD memories for me.  So that you know who is talking, I am a 42-year-old man with non-salt wasting CAH.  I am 21-hydroxylase deficient.  While healthy and happy now, some of the WORST memories I have as a child deal with the way doctors treated me as a guinuea pig. 

In those days, the endo’s had what I referred to as a "Ball Ring" where they would compare the size of my testes with those on the "bracelet".  Very often, it seemed, the doctor was female and utterly callous toward any need for privacy I might have had.  My mother didn’t stick up enough for me -- intimidated by the doctors, I suppose, so let me remind you all of a simple truth:

It is up to YOU -- the parents -- to protect your children from ANYTHING you do not think they should be exposed to.  Being photographed???!!!  Unless you give your consent,  NO WAY.  The doctors do NOT have the right unless you give it to them.  If you think it’s okay, that’s one thing, but if you don’t, SPEAK UP or your children will probably suffer.

I can tell you how awful it felt to be treated like a medical oddity.  CAH is a relatively rare disease, and while doctors need to learn from first-hand experience, they must be vigilantly reminded to respect the children they are examining and would like to document.  Only you, the parents, can do that for your children.

Thank you for your time, and best wishes to you all.  Eric