I completely agree. To be frank, I think a lot of people here are delusional. "Oh I'm cured I just need to apply lip balm etc. every so so" Come on, really? Then they blame dermatologists for not knowing of this RARE condition that like you said, isn't even in medical literatures. The nerve some people have in this f*cking forum.
EDIT: Can't blame em though, this condition is weird and makes you think all kinds of stuff.