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Thursday, November 1, 2012
She’s a fighter: Meet teenager with rare condition that locks her joints, turning her into a “human mannequin” (PHOTOS)
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.
‘My mum and granny were always well dressed. My mum used to dress us up in the biggest, frilliest dresses ever, and having older sisters I was always into clothes,’ the 19-year-old said.
‘I just love all of that. I would love to either be a stylist or a make-up artist or work for someone like Elle.’
She told This Morning: ‘I just love fashion and how you can adapt different trends to suit your own body shape. It makes me happy wearing really beautiful clothes.’
And she got her dream come true, securing work experience placements at London Fashion Week and Elle magazine, both recorded in the documentary.
The experiences were came with their own challenges – Miss Wedderburn has to be accompanied at all times because of her limited mobility and also has to be careful in crowded places, as any bump could cause her body to lay down more excess bone, locking another joint.
But she refused to be put off, saying: ‘If I start to think about things I would never leave the house.’
Sister Samantha, 21, accompanied her to fashion week where she joined designer Nadine Merabi, helping at hair and make-up trials then checking models’ hair, make-up and clothes before they hit the catwalk.
At her placement at Elle, her mother Ciona, 44, also had to be on hand to help with practicalities like sitting comfortably at her desk.
Miss Wedderburn admitted the latter was easier for her because of the chaotic nature of being backstage at fashion week.
And she said she had been met with a positive reaction from everyone – which is not always the case. ‘People have all sorts of different reactions,’ she said.
‘For some people it can take a lot for them to understand. You have to sit and explain it.
‘But all my close family and friends are just like, “you’re normal, get on with it”. There’s never been, “you’re different, you can’t do this, you can’t do that”.’
She often sticks to the mantra: ‘if it doesn’t bother me it shouldn’t bother you’, and is adamant that FOP will not stand in her way.
‘If I think it’s fine and I can manage to do it, I will do it,’ she added.
Miss Wedderburn now plans to pursue her career however she can from home, including a fashion blog and her own styling and make-up business.
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,’ Miss Wedderburn added.
‘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.’
But she refuses to fear the future – either the possibility of not living past her 40s, or being locked into one position.
‘It doesn’t actually scare me because I don’t think about it. If it happens, it happens, and if they find a cure then that will be amazing.’