FOP: Human Mannequin Syndrome


Loading ImageFibrodysplasia ossificans progressiva (FOP) or human mannequin is a genetic disorder which, over the course of years, locks up a sufferer’s body making it totally impossible for them to move on their own. The disorder has no known cure and cuts life expectancy down to 41 years.

There are only 700 suffers of FOP in the world today and around 45 of them live in the UK. Amongst those in the UK is 19 year old Louise Wederburn who was diagnosed with the disorder at age three. It’s something she’s lived with for her whole life and as such she’s an immensely positive young woman who has not let FOP stand in the way of what she wants to do.

It’s often in the very cruellest of circumstances that we find the most inspiring of tails. Louise is definitely one of these. She’s doing what she wants in spite of a disorder which will eventually leave her frozen in place. When you compare your problems to hers, who do you think is worse off? And yet, she doesn’t complain, she just gets on with it. There’s a lot we can learn from her.

FOP attacks the muscles in a bodies joints, slowly turning them to bone. Louise’s arms are already locked in place, along with her spine. The rest of her body could lock at any time and every bump and jolt that she receives hastens the process along. Eventually a sufferer will need to use a vertical wheelchair for mobility and will become incapable of looking after themselves.