How is the information going to get out there if we keep our kids wrapped up in cotton wool. We are a very small group of the world population living with a medical condition. How would you be when you are 1 of only 3 in the world with a condition. We have all our support but think of others who have conditions and there is no research been done at all on them. W e need to educate others and not bit there heads off because of the way questions get answered and the only way to fix them is for us to set things right. Over 30 years ago it was taboo to say a word now we have come alot further and how has that happened from people speaking out and telling the proper story about CAH.  I have told all my friends everything so their know what can happen to me, and i have found who my friends are. We are the luck ones and yes people do come to us for help and understanding of CAH and we put up the shutters. Iam 35 and i have asked questions all my life.

how are people going to learn if we shun them. We know the true story but we need to let others know. I have been written up in research papers by my professors here in Australia, and it has helped with teaching the proper condition with CAH.

We are the ones who need to let the Endo know what is happening with us so things can be researched so things like Early detection can now be done thru a blood test. Everybody needs to realise Education is the only way to find out more.

Sorry if i have trod on some toes but we need to not be so protected and so secretive other wise we will also get called the cottonwool babies.

jayne