I think there are many, many more EC sufferes than we believe

I was talking to my best friend from where I used to live many years back. I hadn't seen him in about a year but talked to him on the phone for new years. I noticed through life his lips were always peeling a lot. I asked him if they went white in contact with water as well and he said yeah. I informed him that he probably has EC. He knew absolutely nothing about it and simply thought he had chapped lips all the time. He said he ripped the skin off whenever he could.

Suffice to say, I think there are A LOT of EC sufferers out there, but few who actually know what they have.