Sunshine takes a dangerous toll on twins with rare genetic disorder

They look cool in their wide-brimmed hats and trendy shades, sharp in their black tops and skinny maroon pants.

But while these twins are as fashion conscious as the next teenager, the outfits they wear are about a lot more than looking good. 

Almost every inch of their skin needs to be protected because the slightest exposure to the sun can exacerbate the condition that’s taken a brutal toll on their quality of life.