Here is another website from someone born with ACC:
Many different peoples, from all walks of life suffer with ACC, sometimes their entire life without knowing, being undiagnosed. While ACC is always going to be a disability, I'm grateful that we are now being diagnosed ante-natal. While there is not much direct "help" for ACC, knowledge IS power and our lives can be so different. I only found out in my forties, but finding out changed my life (for the better) forever!