Ashley Kurpiel, Woman With 'Stone Man Syndrome,' Watches Her Muscles Turn Into Bone; Only 700 People Worldwide With Condition [VIDEO]
![Bones in a human foot](https://d.medicaldaily.com/en/full/258546/bones-human-foot.jpg?w=302&f=eea78541a0df870e9178428567a24668)
Booking a cruise to the Caribbean with friends, learning how to surf, and having a job that you love sounds like an ideal lifestyle. For 31-year-old Ashley Kurpiel, who suffers from fibrodysplasia ossificans progressiva (FOP), or “stone man’s syndrome,” it is imperative to live life to the fullest before she is left immobilized for good.
The Essex-born naturalized American has endured a long life of suffering, but her condition doesn't deter her from her dreams. Kurpiel is one of an estimated 700 people worldwide who live with FOP, an incurable disease that can leave sufferers completely immobilized. According to Genetics Home Reference, extra-skeletal bone formation causes an advanced loss of mobility, as the joints are affected when they are replaced by bone. FOP is generally noticeable during early childhood, starting with the neck and shoulders and gradually spreading to the body and into the limbs.
“During my childhood my mobility was fine, because I was still young,” Kurpiel told the Daily Mail. “But I was quite unhappy. I felt very different from the other children at school, and I didn't have many friends. I was quite shy and kept myself to myself. It wasn't much of a life."
Kurpiel’s symptoms first appeared when she was a teenager as she experienced gradual muscle stiffening that advanced as she started to get older. “I began to feel my body stiffen gradually. I knew I was finally facing the onset of the condition,” Kurpiel said. “I'd been told what was going to happen, and feeling the first symptoms made me want to experience everything life had to offer — before it was too late.”
Kurpiel's family is no stranger to the condition. Kurpiel’s mother, Carol, was diagnosed with FOP when she was 3 years old. And six months later, her right arm was amputated by surgeons who were under the impression that she had cancer, the Daily Mail reports.
Kurpiel's air of optimism has inspired her to reach new heights and have new experiences as much as she can while she still has movement in her body. “My condition has made me who I am - an optimistic person with an inner strength and determination to succeed,” she said.
Kurpiel even got married to now ex-husband Shawn Keeney, 31, whom she met online. The couple lasted three years until their divorce in 2005, but this did not leave Kurpiel bitter or devastated. “I'm still on good terms with Shawn and I look back on our time together with nothing but fondness,” she told the Daily Mail.
Kurpiel’s happy memories were temporarily shattered in 2006 when she suffered a severe car accident that impacted her right leg. Given her FOP condition, Kurpiel was aware that this accident could advance the onset of her leg muscles seizing up. Her right leg remained locked in a standing position, but after the swelling went down, she was able to bend it slightly. In 2007, her leg locked into a bent position permanently. Kurpiel now wears a special platform shoe to help her get by.
While a tragic life event like this could leave someone in the darkest of places, Kurpiel decided that she wanted to learn how to surf and compete in a three-mile course using a specially-adapted wheelchair in Aug. 2012. “I feel so humbled that so many people have taken an interest, and hopefully found some inspiration, in my life,” she said.
She has set up a GoFundMe page to try to raise money for a California surfing event in October. Currently, she has raised $140 for her $2,000 goal.
Watch a video of Ashley Kurpiel's story below: