22 Oct 2015

Ashley Kurpiel - the woman slowly turning to STONE

Riding the blue ocean on a surfboard, Ashley Kurpiel looks like she doesn't have a care in the world.

But the 32-year-old is battling a devastating genetic condition that is slowly turning her into a 'human statue.'

She suffers from the rare illness Fibrodysplasia Ossificans Progressiva, also known as Stone Man Syndrome, which affects just 800 people worldwide.

The disease slowly turns muscles, tendons, ligaments into solid bone, and is currently incurable.

It has already claimed her right arm, the movement in her leg, and is slowly paralysing the rest of her body.

While the disease can leave sufferers completely immobilised, Ms Kurpiel has vowed to live life to the fullest.

Ms Kurpiel, from Peachtree City, Georgia, was diagnosed with cancer when she was two-and-a-half.

Doctors went in to remove what they thought was a tumour - and told her devastated parents it had spread and her arm had to be amputated.
'Five months later, doctors called and said the cancer was a misdiagnosis and I actually had a rare disease that affects one in two million people,' explained Ms Kurpiel.

'I am growing a second skeleton in a sense, becoming a human statue physically.

'Many others living with this lose all mobility, head to toe, and their jaws have locked shut.

'At 25 I lost mobility in my right leg and had to learn to live life and how to move around.

'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.'
The condition arises from a mutation of the body's repair mechanism.

It causes muscles, tendons, ligaments and other connective tissues in the body to turn into bone.

Even the slightest knock can accelerate the growth of new bone, and freeze Ms Kurpiel into place like a statue.

The disease is incurable, and eventually results in death when the cartilage holding the ribs together also solidifies, making it impossible to breathe.

Patients eventually suffocate or suffer a cardiac arrest as their bodies attempt to get enough oxygen.

Ms Kurpiel first began experiencing symptoms 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, she has found time to experience all life has to offer.

She travels the world, goes surfing every year, and her friends have helped her skateboard for the first time.

She has also completed a five kilometre course in a wheelchair, and has become an ambassador for amputees and families affected by FOP. 



Credit: Madlen Davies/DailyMail

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