Meet the Woman Who Is Slowly Calcifying Into a ‘Human Statue’
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| Ashley Kurpiel, although her movement is becoming limited with an extremely rare disease, isn’t letting it debilitate what she wants to do in life. (Photo credit: Ashley Kurpiel) |
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| Ashley Kurpiel traveled to Russia to meet Olesya, a woman with FOP who saw her story and was inspired. (Image source: Ashley Kurpiel/Facebook) |
November 28, 2013: When Ashley Kurpiel was 3 years old, doctors amputated her arm thinking she had cancer. A few months later, doctors found out they were wrong, and Kurpiel’s family learned her condition was much worse.
Over the years, the muscles, cartilage, ligaments and tendons in Kurpiel’s body have been slowly turning into bone.
“I am turning into a human statue,” Kurpiel told TheBlaze.
Kurpiel has a condition known as fibrodysplasia ossificans progressiva (FOP), which affects only a few hundred people worldwide. The genetic disorder results from a mutation in the ACVR1 gene. Physically traumatic events, like a fall or other injury, can cause muscle swelling and a speeding up of the ossification process.
But if you think this disease is slowing Kurpiel down, it’s actually doing just the opposite.
At 31 years old, Kurpiel surfs, travels as an inspirational speaker and watches her niece.
“I have energy, so I’m going to go do it,” Kurpiel said. “Tomorrow, I might not have this mobility. Everyday I do what I can while I can.”
In fact, Kurpiel recently got back from a trip to Russia after a woman with FOP contacted her, saying recent media coverage of Kurpiel’s lifestyle inspired her.
The trip to Russia was eyeopening to Kurpiel. Not just traveling to a different country, but traveling to one without the accommodations for disabled persons.
“If you are physically disabled, you are put away,” Kurpiel said of those in Russia.
“Everyone was looking at me like I was a freak show,” she continued.
Kurpiel and the woman she traveled to Russia to meet appeared on “Let Them Talk,” a talk show Krupiel said was like the Russian equivalent of “Oprah.”
On the show, Kurpiel said she and her friend David, a travel buddy, sang a song called “Beautiful Creature,” which he had written for Kurpiel, to 29-year-old Olesya.
“It was the most terrifying thing I’ve ever done,” Kurpiel said of signing the song acoustically on stage for the TV show. “(Olesya) loved it though.”
Talking with Kurpiel it is hard to believe that she “was a very shy and reserved little girl.” In her youth, she wasn’t impacted by the symptoms associated with FOP. She was, however, an amputee.
In terms of her current mobility, Kurpiel said she has limited movement in her neck, she can only walk short distances because her hips and thighs are fused and she can’t lift her arm normally, but she can feed herself with anything that’s “fork friendly.”
If you touched Kurpiel’s back, she said it would feel like a rock. But unlike a statue or a person who is paralyzed, even though she can’t move, she can feel.
The calcification process, according to Kurpiel, is horribly painful.
“The pain– I tried every narcotic known to man,” she said when her legs began calcifying in late 2006.
She said she wanted her mobility to be taken away — “let me be rock fused,” she said — as opposed to suffering through it.
Watch Kurpiel talk about herself and her condition:
Last month, Kurpiel traveled to Denver, Colo., to be fitted for a prosthetic arm. Being both a patient with FOP and an amputtee, Kurpiel feels she is in a unique position and works to raise awareness and support both communities.
Her main message?
“Life’s not over. It’s different but it’s not the end of the world.”
Over the years, the muscles, cartilage, ligaments and tendons in Kurpiel’s body have been slowly turning into bone.
“I am turning into a human statue,” Kurpiel told TheBlaze.
Kurpiel has a condition known as fibrodysplasia ossificans progressiva (FOP), which affects only a few hundred people worldwide. The genetic disorder results from a mutation in the ACVR1 gene. Physically traumatic events, like a fall or other injury, can cause muscle swelling and a speeding up of the ossification process.
But if you think this disease is slowing Kurpiel down, it’s actually doing just the opposite.
At 31 years old, Kurpiel surfs, travels as an inspirational speaker and watches her niece.
“I have energy, so I’m going to go do it,” Kurpiel said. “Tomorrow, I might not have this mobility. Everyday I do what I can while I can.”
In fact, Kurpiel recently got back from a trip to Russia after a woman with FOP contacted her, saying recent media coverage of Kurpiel’s lifestyle inspired her.
The trip to Russia was eyeopening to Kurpiel. Not just traveling to a different country, but traveling to one without the accommodations for disabled persons.
“If you are physically disabled, you are put away,” Kurpiel said of those in Russia.
“Everyone was looking at me like I was a freak show,” she continued.
Kurpiel and the woman she traveled to Russia to meet appeared on “Let Them Talk,” a talk show Krupiel said was like the Russian equivalent of “Oprah.”
On the show, Kurpiel said she and her friend David, a travel buddy, sang a song called “Beautiful Creature,” which he had written for Kurpiel, to 29-year-old Olesya.
“It was the most terrifying thing I’ve ever done,” Kurpiel said of signing the song acoustically on stage for the TV show. “(Olesya) loved it though.”
Talking with Kurpiel it is hard to believe that she “was a very shy and reserved little girl.” In her youth, she wasn’t impacted by the symptoms associated with FOP. She was, however, an amputee.
In terms of her current mobility, Kurpiel said she has limited movement in her neck, she can only walk short distances because her hips and thighs are fused and she can’t lift her arm normally, but she can feed herself with anything that’s “fork friendly.”
If you touched Kurpiel’s back, she said it would feel like a rock. But unlike a statue or a person who is paralyzed, even though she can’t move, she can feel.
The calcification process, according to Kurpiel, is horribly painful.
“The pain– I tried every narcotic known to man,” she said when her legs began calcifying in late 2006.
She said she wanted her mobility to be taken away — “let me be rock fused,” she said — as opposed to suffering through it.
Watch Kurpiel talk about herself and her condition:
Last month, Kurpiel traveled to Denver, Colo., to be fitted for a prosthetic arm. Being both a patient with FOP and an amputtee, Kurpiel feels she is in a unique position and works to raise awareness and support both communities.
Her main message?
“Life’s not over. It’s different but it’s not the end of the world.”
Courtesy: The Blaze
