Hey there. I completely agree: it would be enormously helpful if the root cause of our problem was uncovered. The social problems related to this lip thing really suck, too :(
The dermatologists would probably be super helpful and are likely our best bet at understanding what's happening, but sometimes I think that they don't like to give advice due to potential legal issues (basically, there is no tangible reason for them to help and a big potential negative). One thing that seems to be especially insidious is the suggestion, which seems to be repeated all over the place, that our lip problem is factitious. That honestly makes me feel queasy and if it's taken seriously will short circuit any serious attempts at figuring out what's really going on.