For most of us, everyday tasks like brushing our hair, getting dressed or picking up the phone are minor, simple chores.
But, for 18-year-old Louise Wedderburn, these are the impossible tasks. Louise suffers from a rare genetic disorder called Fibrodysplasia Ossificans Progressiva. As she grows older, the condition will affect every one of her joints - meaning her body will slowly be locked in place until she is completely frozen like a statue, unable to move.
Louise is the focus of the new Channel 4 documentary - The Human Mannequin - which follows her daring journey as she tries to conquer the fashion world and declare her independence.
The Muscular Dystrophy Campaign
0800 652 6352
The Muscular Dystrophy Campaign is the leading UK charity focusing on muscular dystrophy and other related conditions. We are dedicated to beating muscular dystrophy and other related conditions by finding treatments and cures and to improving the lives of everyone affected by them.
International FOP Association
The International FOP Association is a non-profit organization supporting medical research, education and communication for those afflicted by the rare genetic condition Fibrodysplasia Ossificans Progressiva (FOP). Our mission is to eliminate FOP as a health concern through education, advocacy, research and support.
FOP Action was founded to offer a forum for advice and support to all those affected by FOP, creating a place to find out about helpful aids and equipment and to exchange views and ideas. Since the discovery of the FOP gene in 2006, finding treatments and a cure are a distinct possibility but we need help to support research.
Contact a Family
0808 808 3555
Contact a Family provides support, advice and information for families with disabled children, no matter what their condition or disability. With over 30 years of experience of working with families with disabled children, CAF’s vision is that all families with disabled children are empowered to live the lives they choose to live, and achieve their full potential, for themselves, for the communities they live in and for society.