Sandy, you say......

 "Your question to how I would like CAH to be presented to the media, how else, WHAT IT IS!  We all have to understand that if we try to disguise any part of CAH all you are doing is slowing down the understanding that is not something we asked for, it is just the way nature works.  To be honest, the only way that people will start giving attention to anything is if it is radically put in their face as vividly and frank. "

I have to agree with you wholeheartedly but unfortunately I see a huge dichotomy between how many parents of CAH children think and how many adult people with CAH themselves thinks. Now having said this I know that this is a generalization and will not be the case 100% of the time.

However parents of CAH children as I perceive them are generally very fearful (perhaps even paranoid) of media exposure. I can’t explain their extreme fear suffice to say that good, bad or indifferent media write-ups may direct their wider families, friends, acquaintances to summize upon their child’s diagnosis ie. put one and one together.

Some parents have also said that if their child reads a poor media article then they may be devastated, but if they do I say, what a great opportunity to open dialogue with their child/adolescent regarding a whole lot of things about CAH and some of it’s less talked about aspects, also how the media researches information and sometimes gets their facts wrong/right on a whole lot of issues.  Maybe also how brave that person was going to the media or isn’t it great to see a picture of someone else with CAH etc. etc...... Yes it’s possible that the adolescent may read something about CAH in the media without the parent knowing which may unsettle them, but heck they can do that on the internet these days too.

Perhaps the difference in our perspective between parents (of CAH children) and the adult CAH person is that many of us adult CAH people, despite many difficulties, do develop a good self esteem, feel quite comfortable with ourselves and do not need to protect our information so guardedly and therefore are prepared to be more open about ’our story’. Thus either reading a CAH story in the media or contributing one does not freak us out near so much.