Brave woman, 25, battling rare condition turning her into a human statue as smallest bump can change her muscles to boneLucy Pratt's neck has already seized up and she can't move arms over headRace against time for cure before she is covered in an 'external shell of bone'
'My biggest fear is it going into my legs. I don't want to be in a wheelchair'
20:04 GMT, 23 May 2012
Everyone gets the odd bump or bruise from time to time.
But while most of us can shrug them off with little thought, Lucy Pratt fears the worst.
The 25-year-old is battling a rare and progressive condition that is turning her into a human statue.
'I try not to think about the future': Lucy Pratt is battling a rare and progressive condition which is turning her muscle into bone, slowly transforming her into a human statue
It causes her muscles to turn to bone and even the slightest knock can accelerate this extra growth and freeze her into place.
Her neck is already locked into position and she can't move her head. She has restricted movement in her jaw and is unable to raise her arms above her head.
Large, painful ribbons of bone have also formed across her back. Now, she faces a race against time to find a cure before she becomes locked in her own skeleton.
Lucy, who is originally from Stourbridge, West Midlands, but now lives in London, said: 'It's a progressive condition so it's only going to get worse.
'I try not to think about the future. There's no point in thinking like that. My biggest fear though is it going into my legs. I don't want to be in a wheelchair. I really like having my independence.'
Came on suddenly: Lucy aged three. Most sufferers with her condition are diagnosed when toddlers, but she did not show any symptoms until her teens
The condition, fibrodysplasia ossificans progressiva (FOP), makes even the simplest of everyday tasks difficult. Lucy is unable to drive, struggles to get dressed and even brush her hair.
It is so rare, only about 45 people in the UK have been diagnosed with it.
Sufferers are usually diagnosed as toddlers, but amazingly, Lucy didn't show any symptoms until she was 15.
She said: 'I had been absolutely fine but one day I fell over. A huge lump appeared on my back. It was right across my shoulder blade.
'The swelling was the size of my palm and very red. It was hot and extremely painful. I couldn't lie on it or put any pressure on it.'
Extremely rare: Lucy aged 14, a year before she first noticed symptoms when she fell over one day and a huge lump appeared on her back
When it didn't go down after a few days, her worried mum took her to the hospital.
Doctors feared she had cancer and took a biopsy but it came back clear. They put her on a course of steroids to help reduce the swelling and she was kept in hospital.
However, lumps developed at the back of Lucy's neck and the other side of her back.
She was then diagnosed with necrotising proliferative myositis, a rare disease where muscle fibers and skin become inflamed and damaged.
Medics were just about to give her treatment when a consultant stopped them.
Lucy said: 'He asked me to take off my socks. I thought it was a really strange question.
'He looked at my toes and said I had fibrodysplasia ossificans progressiva.'
The consultant noticed Lucy's big toe was shorter than her second toe, which is a classic sign of FOP. X-rays and further tests confirmed the diagnosis.
Lucy said: 'It's so rare, hardly any of the doctors had heard of it. I was just lucky he had come across it before.
'He told me the one thing I should never do is look it up on the internet but when someone tells you not to do something, you do it.
'I was terrified when I read what might happen to me, but then I thought I had to get on with it.
'I could feel the lumps growing. We didn't know what to do. I would nearly pass out because the pain was so bad.'
Her parents Nick and Sheryll sought out a specialist who warned them Lucy should avoid most things children her age enjoy, like sports.
But brave Lucy was determined her condition was not going to hold her back and she sat her GCSEs in hospital, achieving six A*s and two As.
She went on to complete her A Levels before securing a place at Oxford University to study Physiological Sciences.
'Incredibly determined': Lucy with her mother, Sheryll Hadley, who is the chairman of the charity FOP Action UK. She says she is proud of her daughter's positive attitude to the condition
Despite facing a daily struggle, Lucy has a full-time job with a bio-medical science publishing company.
She said: 'There are a lot of things I can't do but I don't like to see it like that.
'I'd like children in the future but doctors have said there's a 50/50 chance the child will have FOP. I hope by the time I have children there might a be a cure.'
Lucy's mum, Sheryll Hadley, 54, who is the chairman of the charity FOP Action UK, says she is proud of her daughter's positive attitude.
'She looks at what she can do and what she's achieved. She is just incredibly determined. She's always been that way.'
Six years ago, researchers discovered the gene that causes FOP and the compound that halts bone growth.
At present, there is no Government funding available so FOP Action UK needs to raise 120,000 by the end of the year to allow this research to continue.
Professor Paul Wordsworth, an expert in FOP from Oxford University, said: 'FOP is one of the most debilitating conditions I have to deal with.
'Essentially, sufferers become covered in an external shell of bone. They can become like statues.
'Isolating the gene was a fantastic breakthrough and we are now at the stage where we are looking to hold clinical trials.
'If we can find something that works and switches the bone formation off then it is possible that we have a drug that could stop the disease spreading any further for Lucy and other patients.'
For more information on the condition, visit www.fopaction.co.uk