FOR most people, a fall or a trip is a fairly minor injury – but for Rachel Winnard even a slight knock has her living in fear.
The 35-year-old suffers from a rare condition which causes the muscles to turn to bone and slowly turning her into a human statue.
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Rachel, from Rochdale, Greater Manchester, is now unable to walk as her legs have fused and locked her in a standing position.
She said: “It’s affected everything in my life. I can’t do anything for myself anymore. My husband has to do everything for me.
“It’s taken me to some difficult places emotionally. I feel like a burden to people around me.
“I get people all the time staring at me when I’m in public. I try to explain to them what’s happening to me but generally they’ll just stare.”
Ultra-rare condition
Rachel was born with Fybrodysplasia Ossificans Progressiva – a one-in-two million condition caused by bones forming within muscle in the body.
She says it had been manageable until she entered her 20s and her condition began to deteriorate in 2012.
Rachel has now lost control of her neck, both arms and both hips and has to be carried up the stairs by her husband Paul.
She is unable to walk and lean back on a normal chair or sofa because of how her muscles have fused.
Eventually the condition will cause all her muscles to turn to bone.
I take each day as it comes, life can be hard though
Rachel Winnard
She said: “I wasn’t diagnosed with it until I was 12.
“Up until the age of 20 it didn’t really affect me, even when I got married I was fairly able bodied.
“About seven years ago my left hip locked so I had to start doing physio and hydrotherapy but since then I’ve had to use a crutch to help me walk but these days even that’s a struggle.
“I take each day as it comes, life can be hard though. I can’t go to friends houses because my mobility is so bad, I can’t go out at all.
“I’m cared for by my husband and helped out by other relatives.
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“There aren’t really any words. I don’t know what I’d do without them.
“I try to keep my sense of humour as much as possible.”
Rachel’s husband Paul – who has been his wife’s full-time carer since they were married in 2010 said that although caring for his wife has been a massive challenge he loves her all the same.
He said: “It’s been horrendous, it’s been very difficult. I can’t describe how upsetting it’s been to watch this happening to my wife.
“We love each other and want to be together but we can’t do anything anymore, we’re basically housebound.
A RARE CONDITION THAT CAUSES BONE TO FORM OUTSIDE THE SKELETON
Fibrodysplasia ossificans progressiva (FOP) is a disorder that causes muscle tissue and connective tissue such as tendons to be replaced by bone that forms outside the skeleton.
The process generally becomes noticeable in childhood, usually starting in the neck and shoulders and proceeding down the body.
Extra-skeletal bone formation causes progressive loss of mobility as the joints become affected.
Any trauma to muscles, like a fall or medical procedure, may trigger episodes of muscle swelling and inflammation, followed by ossification – the formation of bone.
People with the condition are often born with malformed big toes, short thumbs or other skeletal abnormalities.
There are no known effective treatments for FOP.
Some drugs have been used to reduce pain and swelling.
Occupational therapy treatments like special shoes and braces can help manage the symptoms.
Biopsies and invasive tests are not recommended due to the trauma they cause muscles.
“We used to have a great social life, we’d be out having dinner and drinks with friends. Now she’s very limited as to what we can do.
“She’s changed drastically since we got married, she’s deteriorating all the time.
“She needs 24/7 care as she’s not able to get up the stairs unaided.
“She’s strong willed but she’s hugely frustrated by what’s going on.”
Rachel is currently trying to raise £20,000 on GoFundMe to pay for the instillation of a lift that will let her get downstairs without having to use the stairs.
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She said: “Raising the money on GoFundMe for the lift will make things so much easier for me.
“Paul won’t have to carry me down the stairs and I’ll be able to go up and down as I please.
“It’s a lot of money but it’ll make such a huge difference to me.”
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