Woman Turning Into Human Statue As Her Muscles Freeze to Bone: 'I'm Growing A Second Skeleton'
A WOMAN is turning into a real-life statue due to a rare condition that solidifies her muscles, but she's still living life to the full.
Ashley Kurpiel suffers from a rare condition that turning her muscles to bone.
The illness, called Fibrodysplasia Ossificans Progressiva affects about 800 people worldwide.
And the incurable disease has already cost Ashley her right arm. But, even though the disease can leave sufferers completely paralysed, brave Ashley has vowed to live life to the fullest.
"When I was about two and a half doctors diagnosed me with cancer," she said. "They went in to remove what they thought was a tumour - and told my parents that it had spread and that my arm needed to be amputated."
However, five months later doctors called and said cancer was a misdiagnosis and that she had a rare disease that affects one in two million people.
"I am growing a second skeleton in a sense, becoming a human statue physically," she said. "Many others living with this lose all mobility, head to toe, and their jaws have locked shut."
At 25, Ashley lost mobility in her right leg and had to learn to move around being partially paralysed.
"I don't know how much longer I will have movement in my body, so I want to experience as much as I can now," she said.
The condition arises from a mutation of the body's repair mechanism which causes muscles, tendons, and ligaments to convert to bone material when damaged.
Ashley, from Peachtree City, Georgia, first started experiencing the symptoms of the disease as a teenager.
She said: "I began to feel my body stiffen gradually - I had been told it was going to happen but once I started feeling the symptoms I wanted to experience everything life had to offer before it was too late."
Despite the fact that her body is locking up, Ashley has found time to experience all life has to offer.
Her friends have helped her skateboard for the first time, she goes surfing annually and she travels the world.
She has also completed a 5K course in a wheelchair, and has become an ambassador for amputees and families affected by FOP.
Ashley said: "I've been blessed to meet so many truly amazing people, especially the Dalai Lama.
"I attend many events all year round for the IFOPA, and talk to other people who are suffering.
"I spend a lot of time on social media answering messages that families send me regarding FOP and I try to help as many people cope with the disease as possible.
"I look for the positive side of things - I've had my hardships and never know what the next day will bring, but I take each day as it comes."
Comments
Post a Comment