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Actually if you think about it, parents face an unknown condition threatening to kill or harm their child, and become frantic trying to learn about it in order to protect that child. You can understand, therefore, their need and desire to discuss the condition and the problems surrounding it. People with CAH, on the other hand face a condition they've had for a long time, and are hesitant to talk about it with just anyone. So obviously since the urgency to discuss is greater on the part of the parents, there is more discussion from them. I'm not trying to say parents have it worse off that the people with CAH, but that they have to learn about it quickly, whereas most people with CAH have those same parents to care for them until they learn to handle the meds and whatever care needs to be taken. So discussion is a tool desperately grasped by parents.
But, Krystin also made several false observations in claiming that only the parents were objecting to the mischaracterization of CAH and those with it. Since there are more parents who post here (as per the reason above) there would be more discussing it, but I find just as enthusiastic and passionate posts from people with CAH in regards to the myths of CAH perpetuated by the media and some doctors.
