My situation was very like Brenda’s; SV/CAH and this disorder was not talked about in my family. It’s only in the last two years that I have done a lot of talking with my sibs about CAH. In talking recently to my elder non-CAH sister as to her perceptions of what was wrong with our younger sister and myself , she said that: she always thought from the snippets she heard, that we were going to grow up into "big hairy monsters". She felt sorry for us having to do all the urine tests into the"big bottles" and doctors visits. It was very worrying for her.

I have also recently been able to open the doors of communication with my mother, on the topic of CAH. Whereas, I once thought that my parents were secretive, I now realise that they knew very little themselves. However I’m sure that their manner and demeanour with general information, could have been much more open.

Parents now have a much better opportunity to be informed about conditions such as CAH, in order to guide their CAH child/ren .....thus sparing their child/ren the added encumbrance of shame and confusion because of apparent secrecy.

I have a feeling, that the way parents deal with this issue of information sharing, with their CAH child/ren, is the single most important factor contributing to the child’s ability to accept their disorder/maintain self esteem......REGARDLESS of all the other nasty interventions that take place with doctors/hospitals/surgery/tests/medications etc.