‘I’m becoming a human statue’: Woman with rare condition that’s turning her muscles to bone

Ashley Kurpiel suffers from fibrodysplasia ossificans progressiva, which affects just 800 people worldwide

A ‘human statue’ with a rare condition that turns her muscles to bone has vowed to live life to the fullest – before she loses the ability to move.

Ashley Kurpiel suffers from fibrodysplasia ossificans progressiva (FOP), an incredibly rare condition that affects around 800 people worldwide.

The incurable and debilitating disease, which slowly turns muscles into solid bone, has already cost 33-year-old Ashley her right arm.

It can leave sufferers completely immobilised, so Ashley isn’t wasting any time.

She said: “When I was about two-and-a-half doctors diagnosed me with cancer.

“They went in to remove what they thought was a tumour – and told my parents that it spread and they my arm needed to be amputated.”

“Five months later, doctors called and said cancer was a misdiagnosis and that I had a rare disease that affects one in two million people,” she continued.

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

Support: Ashely with her mum Carol and dad Fred outside their home in Peachtree City, Georgia(Image: Barcroft)

“Many others living with this lose all mobility, head to toe, and their jaws have locked shut,” Ashley said.

“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,” she added.

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, whose mum Carol emigrated to the US, from Hornchurch in Essex before she was born, now lives in Peachtree City, Georgia.

She first started experiencing symptoms as a teenager.

Active: Ashley tries to experience as much as she can – like handling a snake in Venice Beach, California(Image: Barcroft)

“I began to feel my body stiffen gradually,” she said.

“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.”

Snap happy: Ashley holding an alligator during the NubAbility Kids Winter Baseball Clinic in Florida(Image: Barcroft)

Despite her body locking up, Ashley tries to experience all life has to offer.

Her friends have helped her skateboard for the first time, she goes surfing annually and travels the world.

She has also completed a 5km 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.”

Human statue, Ashley Kurpiel, who suffers from a rare condition which turns her muscles into bone