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Incredibly rare disease ‘Stoneman syndrome’ turns muscles into bones

Home> News> Health

Published 17:16 17 Sep 2023 GMT+1

Incredibly rare disease ‘Stoneman syndrome’ turns muscles into bones

The disease is incredibly painful to live with.

Harley Young

Harley Young

Featured Image Credit: Reddit/u/stressed_kashmiri

Topics: Health, Reddit, Science, Weird

Harley Young
Harley Young

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You might sometimes wake up the morning after a heavy gym session and feel like your body has turned to stone.

After a couple of minutes hobbling around and a few gentle stretches, the uncomfortableness eases and you're able to get on with your day. But unfortunately, in some rare cases, people are living with a disease that causes their muscles to actually begin turning to bone.

The disease is incredibly painful.
Reddit/stressed_kashmiri

Known by its scientific name Fibrodysplasia ossificans progressiva (FOP), this musculoskeletal condition causes the muscles and tendons to transform into bone through a process known as Ossification. It's said to create a second 'skeleton' of extra bone around the muscles and other organs.

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Although rare, the disease is incredibly painful and restricts movement overtime, resulting in paralysis and, ultimately, death.

X-ray photos show just how uncomfortable this disease must be as sharp, jagged bones encase the person's entire body, more so in some places than in others.

A Reddit user, who goes by the name stressed_kashmiri, shared these images for other users to see.

Astounded viewers have offered their sympathy in the comments, describing how unbearable the condition must be to live with.

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One wrote: "That looks ridiculously painful." while another corrected them with: "Remove 'looks', it is ridiculously painful."

Another shared a true-life experience they'd had with someone they knew who had suffered from this.

They wrote: "My friends mom died of this. It was horrible. She slowly lost all mobility and was fully aware of what happened the entire time."

Stressed_kashmiri, the original poster, replied: "Thats soo sad man. I've had few experiences with sleep paralysis, and even in the 1-2 Minutes that are spent in a state where you can't move are psychologically horrifying, even though you know it is temporary. But this is something that is actually manifesting PHYSICALLY, gets worse throughout life and slowly turns you into a statue. Can't even fathom it."

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The disease is caused by a genetic mutation.
Reddit/stressed_kashmiri

Thankfully, for the poor minority of people suffering from this terrible disease, scientists are exploring cures and treatments for it.

Researchers who have been working with mice believe that the disease is caused by mutations in a gene called ACVR1. This gene is responsible for bone and muscle development.

Researchers at Regeneron have developed an antibody that prevents activins from triggering the gene. The antibody successfully stopped bone formation in lab mice that had been genetically engineered to carry the mutation.

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Betsy Bogard, director of global research development for the International FOP Association, said: "We are very fortunate and grateful that not only did Regeneron make this basic science discovery, but that, as a biotechnology company with expertise in developing antibodies, they are in a position to act on it and answer the next questions about whether this could lead to a meaningful therapy,"

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