“I get asked a lot if I feel like I’m on borrowed time… I definitely don’t – it’s my own. And I’m going to use it to the best of my capabilities.”
Lucy Beal Lott is 20 and lives with a rare condition called epidermolysis bullosa (EB).
It means her skin can tear and blister at even the slightest touch, and Lucy often has to bandage up painful wounds.
Young people with EB are sometimes called “butterfly children” because their skin is fragile, like a butterfly’s wing.
“The question I get asked quite a bit online is: ‘Does it hurt?’ And I’m like, ‘I mean, yeah. Open wounds can be quite painful’,” she says.
“Right now, I also have a large open wound on my ankle, and I