Hi Scarysun,
didn't see your message until today. Welcome to SkinCell!

Anyway, I suffer from PMLE as well and know what it feels like to always have to avoid the sun. I have nothing new to add about the disorder at the moment, but if you search the forum you will find some helpful advise that we have posted previously. Actually, some people with PMLE can actually respond very well to the available treatments. Unfortunately I am not one of those lucky people, but if you haven't tried anything yet, you really should see your dermatologist and discuss some the possibilities.
Cheers,
Richie