I have to agree with you, whenever I read that first line of that article "our knowledge of the experience of adults with CAH as they pass through life is only now emerging" ....(and let's give due credit that at least someone has started to write about CAH adults) I think, "where have you researchers been all this time"? I've been an adult for a long time!
Of course they didn't know a lot of things but the assurances we have received over years from the mouths of endos were very dogmatic- "oh why would you need extra calcium/DHEA/supportive treatments for CAH - there's no need at all?"; "oh you lack energy, well that's not connected to CAH"....... ad infinitum!
It does irk me a whole lot.
Regarding the book I think you may be talking about! It is A Parent's Guide so it naturally doesn't deal with menopause as not too many children have to deal with that!! We'll be in our eighties/nineties and even dead by the time enough evidence and research has been put together about menopause and the CAH patient, because no-one is asking us now - so we will miss out again!
It all happens too late for us! We missed out on good treatment as children - fine tuned steroid doses - not! We missed out on good surgery - everything got excised or mangled! We missed out on gynaecological/psychological support that children/teens now receive. We missed out on fertility/reproductive ability by a few short years (nobody tried too hard for us). Now doubtless we will miss out on any benefit of research on menopause and ageing and goodness knows what else!
At least we got to live - unlike our pre-1950 predecessors.!
