Fibrodysplasia Ossificans Progressiva and Fashion?

Teenager Louise Wedderburn born with an extremely rare condition called Fibrodysplasia Ossificans Progressiva, a rare genetic condition which is causing each of her joints to lock, as her muscle turns into bone. In spite of this she is determined to build a career in fashion as Channel 4 chart in a new documentary, The Human Mannequin.

Will the notoriously image conscious fashion industry accept her, or will her extraordinary condition stand in her way?

Fibrodysplasia Ossificans Progressiva – known as FOP – an unusual, progressive and ultimately terminal genetic disease, which causes soft tissue to turn into bone, freezing and stiffening a body into place permanently. The condition is extremely debilitating, often painful and in the past few years Louise’s limbs have become frozen and contorted, severely restricting her mobility.

In Channel 4’s intimate and inspiring film the broadcaster follows Louise on a remarkable journey from her hometown of Fraserburgh, Scotland, to the Fashion Capital of the UK – London, where she’ll discover if she can balance the realities of her condition with the demands of the chaotic and image-obsessed fashion world.

FOP is extremely rare, affecting only 700 people worldwide and only 45 in the UK.

Louise lives at home with her mum and sister, who between them provide the continuous care she needs to live with this devastating disease. There’s currently no known cure although research scientists have recently managed to stop the condition progressing in mice. Due to the cruel nature of the condition, current life expectancy is just 41. As Louise’s body continues to produce excess bone, it could be only a matter of years before she is permanently frozen in an upright position, requiring a standing wheelchair to get around. Despite these seemingly insurmountable limitations she remains upbeat, determined that she will not be defined by her condition, nor let it dictate her life choices.

Louise’s passion for fashion and make up started when she was a young teen her dream is to find a career the industry she loves and she’s managed to secure work experience behind the scenes at London Fashion Week and a placement at the world-renowned woman’s fashion magazine, Elle.

Louise has to be accompanied at all times as her mobility and agility are extremely limited and she has to be especially careful in crowded places. Any bump or knock could cause her body to lay down more excess bone which may, in turn, lock another joint – a worrying prospect in the chaos of working back stage at a fashion show. How will Louise cope in the capital and can she find a way to make her fashion dreams come true?

The Human Mannequin November 1^st, 9pm on Channel 4