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Teen girl suffering from rare bone disease turning into 'human mannequin'

London, Thu, 01 Nov 2012 ANI

London, Nov. 1 (ANI): A teenage girl from Aberdeenshire is suffering from a rare genetic condition that is transforming her into a "human mannequin," by causing her soft tissues turn into bone.

Louise Wedderburn was born with Fibrodysplasia ossificans progressiva (FOP), which is freezing her body permanently into place, the Daily Mail reported.

To date there have been just 700 confirmed cases of the rare disease worldwide and only 45 in the UK.

The disease has no known cure and the life expectancy of those with suffering from FOP is just 41.

It could only be a matter of years before the 19-year-old is frozen in an upright position, needing a standing wheelchair to get around.

But the teenager, from Fraserburgh in Aberdeenshire, insists: "It's never going to stop me from doing what I want to do."

She has already defied the odds stacked up against her to attend her school prom despite being home-schooled for the majority of her education.

Wedderburn's story has been captured in Channel 4 documentary 'The Human Mannequin.'

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

Diagnosed as a 3-year-old, it was when she hit puberty that the condition took hold. Both her arms are locked in place and her spine is frozen.

But the illness has not affected her passion for fashion - she buys all the newest products and spends hours practising techniques and styles, as well as filling her wardrobe with the latest fashions.

And she got her dream of working with Elle come true, securing work experience placements at London Fashion Week and Elle magazine, both recorded in the documentary.

The experiences have come with their own challenges - she has to be accompanied at all times because of her limited mobility and also has to be careful in crowded places, as any bump can cause her body to lay down more excess bone, locking another joint.

"If I start to think about things I would never leave the house," she said.

There are also hopes for a cure for FOP after research scientists recently managed to stop it progressing in mice.

"The last time I heard, any cure could be about three to five years off," Wedderburn said.

"Of course I'm hopeful but I don't get all excited and think it's going to happen, because they could say three to five years but it could be longer," she added. (ANI)

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