Stone Man Syndrome—One Woman's Experience With This Rare Disease

This woman's muscles are slowly turning into solid bone.

Having a disease that slowly turns your muscle and tissue into bone sounds like something straight out of a nightmare, but for one young woman in Missouri, it's a reality.

Carli Henrotay can't raise her arms above her head, bend at the waist, or stand on two legs because bone growth has caused her joints to lock. More bone will grow as time goes on, and there's, unfortunately, no cure.

Receiving the Fibrodysplasia Ossificans Progressiva Diagnosis

When Henrotay was about 5 years old, she fell off a stool and injured her back. But unlike most 5-year-olds, her body wasn't quick to heal itself. She was extremely swollen, and doctors were stumped by her symptoms, according to the Daily Mail.

One doctor, however, had seen a case like this before. He asked to see Henrotay's toes, and his suspicions were quickly confirmed. Her big toes were much shorter than the rest, a tell-tale sign of fibrodysplasia ossificans progressiva (FOP).

About Fibrodysplasia Ossificans Progressiva Diagnosis—Also Known as Stone Man Syndrome

As of 2022, only about 900 people worldwide are known to have FOP, according to the International FOP Association. It's caused by a gene mutation, and symptoms usually become noticeable in early childhood.

Trauma, such as a fall, invasive medical procedure, or viral illness, may trigger muscle swelling and inflammation episodes. These flareups can last from several days to months and often result in permanent bone growth in the injured area. This is what happened to Henrotay when she was 5.

"The first thing to go was my back. Over time it has turned into a sheet of bone," she told the Daily Mail. Bone has now grown in many other parts of her body, as well. "My jaw is locked and I have less than two millimeters of opening," she said, "so it makes it harder for me to eat or talk and project my voice."

Surgery to remove the new bone isn't possible because the trauma would only cause more growth, but Henrotay has hope that there will one day be a treatment for FOP.


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What Her Future Looks Like With This Rare Disease

More bone will grow throughout Henrotay's body over time, likely restricting her mobility even further, but her family encourages her to live as full of a life as possible. She purchased a house with her partner and is learning how to live independently. "I am excited to get in my new home and see where my independence can take me," she said, "but it also is a double-edged sword because I know it will hinder me, as well."

Though Henrotay's condition does limit her, she hasn't let it define her. "I want people to understand that disability isn't the whole part of me even though you can see it," she said. "You need to see more than the wheelchair and just see me as a person before you judge me for the disability."

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