Louise Wedderburn, from Fraserburgh, Aberdeenshire, was born with Fibrodysplasia ossificans progressiva (FOP), a genetic disease that causes soft tissue to turn into bone. Already both her arms are locked in an immovable position and her spine is similarly fused.
The 19-year-old's story was first documented in a Channel 4 programme shown in November.
The life expectancy of those with FOP is just 41 and it could be only a handful of years before she requires a standing wheelchair to get around.
Yet Ms Wedderburn refuses to be beaten and is determined to follow her dream of becoming a top-flight stylist and make-up artist.
She said: "Sometimes, I can push myself too far, but I know when I need to hold back. If things are getting a bit much you will see me quietly go and take a minute to myself. Then afterwards I get right back into what I was doing."
It is believed a cure for FOP could be three to five years away. Ms Wedderburn said: "That would be amazing but I'm trying not to get my hopes up. It could happen in that timeframe or it could take longer. I'm confident of seeing a cure in my lifetime."
l See the full fashion shoot and interview in The Herald Magazine tomorrow