Hunter Steinitz from Pittsburgh, USA could be mistaken for a victim of severe burns.
However, Hunter, 18, was actually born with an extremely rare condition called harlequin ichthyosis, also known as Harlequin syndrome. Her skin is too thick, and as a result she is covered in red, dry, scaly patches.
Brave Hunter is also unable to close her eyes, grow hair or even sweat, so she’s in constant danger of dehydration.
Her parents Mark and Patti were shocked when they learned of the disease.
‘You could tell in all of these medical people’s faces in that room,’ says Mark, ‘right then I knew something was clearly wrong.’
For a long time sufferers would die at very young ages, but nowadays medical advances and increased awareness have allowed doctors to help Harlequin patients live longer lives.
'I’d go to sleep at night wishing I could just wake up and be like everyone else'
Brave beyond words
What a cracking smile!
But of course people like Hunter still have to cope with constant pointing and staring, as well as some more negative reactions.
Hunter was bullied relentlessly for her severe condition, and after a while she started to wonder if she deserved the abuse, if she really was a freak.
But with support from her family and real pals Hunter has now turned a corner.
She’s begun to educate others through motivational speaking, proclaiming that ‘people need to understand that it’s OK to not fit in with the norm, because there is no norm.’
Armed with her new lease of life and unyielding confidence, Hunter will be heading off to university soon and has no doubt that she can overcome any obstacle.
‘I’m not normal and I’m proud of it!’ she insists.
What do you think of Hunter’s struggle with her disorder? Comment below to let us know!