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10/23/2014 10:58:52 AM

The teenager whose joints turn to bone speaks out about life as a 'human mannequin'

The teenager suffering from a rare genetic condition turning her into a 'human mannequin' has spoken out about how she refuses to be beaten by her disease. Louise Wedderburn has a rare genetic condition which causes each of her joints to lock as the muscle turns into bone.

The 19-year-old was born with Fibrodysplasia ossificans progressiva (FOP), a genetic disease which causes soft tissue to turn into bone, freezing her body permanently into place.

There have been just 700 confirmed cases of the rare disease worldwide and only 45 in the UK.
With no known cure, the life expectancy of those with FOP is just 41.

It could only be a matter of years before Miss Wedderburn is frozen in an upright position, needing a standing wheelchair to get around.

But the teenager, from Fraserburgh in Aberdeenshire, told ITV's This Morning: 'It’s never going to stop me from doing what I want to do.'

She already defied the odds to attend her school prom despite being home-schooled for the majority of her education, and has now taken the first steps in a fashion career, doing work experience at London Fashion Week then at Elle magazine.

Miss Wedderburn’s story has been captured in Channel 4 documentary The Human Mannequin, to be aired tonight.

'I wanted to raise awareness of FOP,' Miss Wedderburn said. 'Obviously in our community everybody knows about it because of me, but it’s not as well known as some other conditions.'

Diagnosed at the age of three, it was when she hit puberty that the condition took hold. Both her arms are locked in place and her spine is frozen.

She told ITV's This Morning: 'I was walking along the road when I was three years old and fell. It was initially thought I'd dislocated my elbow, but it turned out I had FOP.

'But no one has ever treated me any differently and my friends and family are a good support system.'
But the 19-year-old’s illness has not affected her passion for fashion - she buys all the newest products and spends hours practicing techniques and styles, as well as filling her wardrobe with the latest fashions.

 

LouiseWedderburn

 

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The teenager whose joints turn to bone speaks out about life as a 'human mannequin'The teenager whose joints turn to bone speaks out about life as a 'human mannequin'

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