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Rare Genetic Condition Causes 23-Year-Old Woman's Muscles and Tissue To Turn into Bone

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There are plenty of scary things in life. From terrorists and cancer to accidents and the slow decline of aging, the world contains tragedies that’ll raise your hackles and cost you sleep.

But I can think of few things more horrible than having your own body become your prison. Sadly, that’s exactly what one 23-year-old Missouri woman is experiencing.

According to the Daily Mail, that’s not just a euphemism when it comes to Carli Henrotay. The St. Louis resident has to use a wheelchair to get around.

Her jaw can barely open, she can’t raise her arms above her head and she can’t lean forward at the waist.

You might think that such maladies could arise due to a neurological condition such as a stroke.

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But that isn’t what Henrotay has to deal with at all. Instead, she faces something called fibrodysplasia ossificans progressiva.

An incredibly rare disorder, it has an odd trademark; Health reports that one of its telltale signs is having abnormally short big toes.

If that were the only issue the genetic disorder caused, the over 800 people suffering from it could manage easily enough. But fibrodysplasia ossificans progressiva causes the body to rebel in horrifying ways.

According to the National Institutes of Health’s Genetic and Rare Diseases Information Center, it is a malady “in which skeletal muscle and connective tissue, such as tendons and ligaments, are gradually replaced by bone (ossified). This condition leads to bone formation outside the skeleton (extra-skeletal or heterotopic bone) that restricts movement.”

No wonder the condition has earned the nickname Stone Man Syndrome. For Henrotay, the moniker confirms the realness of her case.

Her back has become totally ossified.

“The first thing to go was my back,” she said. “Over time it has turned into a sheet of bone.”

Even worse than that is how much it hurts.

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“FOP causes a lot of pain,” Henrotay said, according to the Daily Mail. “I never know how to answer the question, ‘On a scale of one to 10, what is your pain?’ because I live every day and every moment in pain. I am lucky that I have such a high pain tolerance.”

Her physician only discovered the illness by accident.



When she was only 5 years old, she fell off of a bar stool, and that injury prompted a medical investigation. When her doctor saw her toes, he realized what was going on.

Still, Henrotay tries to avoid self pity.

“I definitely get sad at what FOP has taken from my life, but it is not something that I try to dwell on because it is not something that I can change,” she said.

“It is definitely disappointing that I can’t play sports or drive a car or do this, that, or the other thing. But I always try to look on the positive side and remember what I still have and I am thankful for that.”

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A graduate of Wheaton College with a degree in literature, Loren also adores language. He has served as assistant editor for Plugged In magazine and copy editor for Wildlife Photographic magazine.
A graduate of Wheaton College with a degree in literature, Loren also adores language. He has served as assistant editor for Plugged In magazine and copy editor for Wildlife Photographic magazine. Most days find him crafting copy for corporate and small-business clients, but he also occasionally indulges in creative writing. His short fiction has appeared in a number of anthologies and magazines. Loren currently lives in south Florida with his wife and three children.
Education
Wheaton College
Location
Florida
Languages Spoken
English
Topics of Expertise
Entertainment, Faith, Travel




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