‘Human Mannequin’ Louise Wedderburn Refuses to Let Flesh-Hardening Illness Rule her Life

A teenager with a rare genetic condition that turns flesh into bone is determined to defy the odds and work in the fashion industry.

Louise Wedderburn, the so-called human mannequin, was born with fibrodysplasia ossificans progressiva (FOP), an ultimately fatal disease that causes soft tissue to turn into bone.

FOP affects between one and two million people worldwide. When the extra bone is formed across the joints, it restricts movements.

There is no cure although scientists have found a way to stop its progression in mice.

Despite having FOP, Louise, 18, wants to work in fashion. In a documentary about her condition, she travels from her home in Fraserburgh, Scotland, to London, where she hopes to find out if she can balance her medical needs with the demands of the fashion industry.

Louise lives with her mother and sister. Her current life expectancy is around 41. She said: "It's never going to stop me from doing what I want to do.

"I don't want to be one of those people that let their illness get them down.

"I wear eyecatching clothes because I find it a good way to slightly detract from my condition. For the first five minutes it lets people see who I actually am."

Louise needs continuous care. As the disease progresses, she will eventually be frozen in an upright position and will need a standing wheelchair to get around. She has to be accompanied at all times and any knock to her body could cause her to produce more bone.

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

"I don't really like to show my weakness. I've always been a strong, independent person, always hated people feeling sorry for me because if it doesn't bother me it shouldn't bother you."

FOP was first documented in the 17<sup>th and 18<sup>th centuries. Guy Patin, a French physician, mentioned the disease in his writings of 1692.

In 1736, British physician John Freke also described the disease after seeing an adolescent who had swelling throughout his back.

The disease often starts in the neck and shoulders and progresses through the back, trunk and limbs. One symptom is short, bent and occasionally inward-turned big toes, which can be seen from birth.

The Human Mannequin will be broadcast on Channel 4.