Lizzie Velasquez was born without adipose tissue, meaning she has no body fat and, despite eating up to 60 small meals a day, remains at a delicate 4.4stone (58lbs).
Her syndrome is so rare that to this day it remains undiagnosed. Besides Miss Velasquez there are only two other people in the world known to suffer from the condition.
The main symptom is the inability to gain weight. Miss Velasquez is also blind in one eye and has limited vision in the other.
The 23-year-old says her condition is particularly puzzling because it takes on aspects of other syndromes, including progeria.
Miss Velasquez says she has the pointed nose, small mouth and ageing skin of someone with progeria but her syndrome is not though to be terminal.
As she says on her website her condition is 'just one big mystery', but she remains hopeful that one day doctors will discover just what it is and how to treat it.
More photos after the jump......
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