Thank you for acknowledging that there is a need to focus on a CURE.  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. The saddest thing is that society is aware of it, because newborn screening in Iowa Hospitals for the past 5 years consist with testing for CAH.  In the last 5 years there has been a remarkable increase of children with all forms of CAH, but our path to a cure has been obsolete.   There are many theories about why CAH research is standstill, but the core reason is that ALL research grants have been cut and we have had no MEDIA pressure to take this seriously.   Even more sad is that without having a highly public figure (actor, news anchor, etc..) to stand for the fight to cure or research CAH it is very difficult to get the ball rolling to create society pressure on the government.  As you know, it’s all about how it will effect someone’s pocket book, supply and DEMAND.  We are a mediaized society, if you want to get something done you have to advertise it.  For example, as of 3 years ago we never saw pharmaceutical adds on TV, Magazine, etc.., but the manufacturers had to resort due to the decline in revenue from research grant cuts.  Now people are telling their doctors what medication they feel they need and doctors are forced to prescribe in fear of malpractice lawsuits.  I hate the idea society could be so simple minded (I am guilty of this also), but instead of fighting it use it for your advantage. 

As for you 2nd question about how it should be taught in medical schools, I say lets give them the resources to be more efficient.  Medical personnel are only human and are only as good as what is given.  People feel that medical personnel are a one stop service that have a 100% guarantee.  How dare we say doctors are required to be 100% with 50% of resources available, are you (or anyone) 24/7 100% at everything you do.  If you answer yes, you are to far gone to even be reading this.  Treat and expect from these people that they are only human, why do we put so much pressure on our one doctor, but not on the lack of resources they have to work from?  Why, it is because it is easy and we have now become are own mob bosses with the treat of law suits (quick cash).  Teach our medical professionals to treat the problem and you will treat the patient.  You will always have good and bad doctors, the same as you would at any job, but why do we expect less from our government and more from our local endocrinologist?

Keep writing, I am just a small town Iowa girl that realized there is a bigger world out there and many unanswered questions.