Seanie Nammock: UK Girl With Stone Man Syndrome Has Muscles That Slowly Turn To Bone [VIDEO]

By Philip Ross on July 29, 2013 5:29 PM EDT

FOP
Seanie Nammock has an extremely rare condition called Stone Man Syndrome, or Fibrodysplasia ossificans progressiva. The effects of the disease, which causes damaged soft tissue to regrow as bone, are like growing a second skeleton. (Photo: Creative Commons)

Seanie Nammock has a rare and debilitating disease that causes her muscles to slowly turn to bone. The condition, called Fibrodysplasia ossificans progressiva, or FOP, is also known as Stone Man Syndrome and renders the person's limbs immovable like a human statue. Seanie Nammock was diagnosed with FOP when she was 12 years old. 

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Five years later, the teen's back and neck are already frozen in place; according to Mirror, Seanie Nammock is unable to lift her hands above her waist.

"We dread the thought of her second skeleton spreading to the lower part of her body," Seanie Nammock's mom told Mirror. "She will have a life-changing decision to make about whether she wants to stay in a sitting-down or lying down position -- because that's how she will be for the rest of her life."

FOP is one of the rarest diseases in the world. The genetic skeletal disorder afflicts just one in two million people around the globe. In the UK, where Seanie Nammock lives with the condition, just 45 people in the entire country have FOP. The extremely rare condition causes the muscles and tendons of the body to ossify over time, creating a "second skeleton" underneath the person's skin, eventually inhibiting movement and locking joints in place.

According to researchers at the University of Pennsylvania School of Medicine, FOP occurs when a certain gene, dubbed the "skeleton key," is damaged. From a 2006 Penn Medicine press release:

Children with FOP seem normal at birth, except for telltale malformations of the great toes that look like congenital bunions. Early in childhood, painful swellings that are often mistaken for tumors seize the skeletal muscles and transform them into bone. Eventually, ribbons, sheets, and plates of bone cross the joints, lock them in place, and render movement impossible. Attempts to remove the extra bone leads to explosive growth of new bone. Even the slightest trauma such as bumps, bruises, childhood immunizations, and injections for dental work can cause the muscles to turn to bone.

The life expectancy for people with FOP, like Seanie Nammock, is between 30 and 40 years. There is no known cure for FOP.

For many, life with FOP is a constant struggle to keep from getting injured, as injuries cause new bone to form. The Daily Mail reports that for Seanie Nammock, even the slightest knock or thump can cause painful flare-ups that trigger new bone growth.

Here's a few videos uploaded to YouTube about FOP:

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