Louise Wedderburn was born with a genetic condition, Fibrodysplasia ossificans progressiva, which can cause tissue to turn into bone — slowly freezing her body permanently into place. Yet the Scottish 19-year-old remains hearteningly positive. She hasn’t let the condition stop her from interning at London Fashion Week and Elle magazine. And she agreed to be the subject of a documentary –The Human Mannequin, which airs on British TV tonight – in the hopes of raising awareness about her condition.
The condition (known by its initials, FOP) is rare — there have been just 700 confirmed cases worldwide. The average life expectancy for someone with it is just 41. According to the Herald Scotland, Wedderburn was diagnosed with FOP at age three and began experiencing trouble around puberty. In a few years, she could be frozen in an upright position, needing a standing wheelchair to get around.
Yet Wedderburn says she won’t let it stop her from pursuing what she wants to do most — work in the fashion industry. “I would love to either be a stylist or a make-up artist or work for someone like Elle,” she told the Herald. Her mantra: “If it doesn’t bother me it shouldn’t bother you.”
Wedderburn is currently launching a fashion blog and her own styling and makeup business, endeavors she can manage from home. During her internships, including working for designer Nadine Merabi during fashion week, she had to be careful because any bump could cause her body to lock another joint.
“If I start to think about things (like that) I would never leave the house,” she said.
“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.”"
Apparently, scientists were recently able to stop FOP from progressing in mice, stoking hope for a cure in humans sometime soon. But “the last time I heard, any cure could be about three to five years off,” said Wedderburn. ”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.”