This Syndrome Will Slowly Turn You To 'Stone' - It's Rare, But Very Real

The human body is capable of many things, including miraculous feats of strength and a surprising ability to bounce back from damage. We also know our bodies are complicated systems that can malfunction and turn on us, creating rare medical conditions which sound like legends told around a campfire. One of these is Fibrodysplasia ossificans progressiva, a condition in which people whose muscles turn to bone slowly lose all mobility and eventually perish. 

Can people really turn to stone? Technically no, but people's bodies can turn on them and calcify parts of their bodies - such as the muscles and tendons - and cause a tremendous amount of pain. Continue reading for "stone man syndrome" facts and learn how this rare but dangerous disease takes hold. 

Photo: Prime Health Channel

  • It Turns Soft Tissue Into Bone Throughout The Body

    It Turns Soft Tissue Into Bone Throughout The Body
    Photo: Joh-Co / Wikicommons / CC BY-SA 3.0

    Humans are born with soft bones, cartilage, and growth plates that facilitate the creation of bone in their bodies. Cartilage forms at the end of growth plates, and then ossification takes over to create permanent bones. This continues throughout our teen years but comes to a stop once we reach adulthood.

    This is not the case with Fibrodysplasia ossificans progressiva (FOP). A person's bones will continue to grow by overtaking their soft tissue and calcifying it. As the ossification continues to claim the muscles, ligaments, and tendons, it starts to hinder the movement of the sufferer. 

    Eventually, the bones will fuse together, making it nearly impossible for the sufferer to move without assistance. In a sense, a person is turned to stone. The disease becomes very expensive at this point, as a caretaker may be needed to facilitate the everyday care of the patient. Wheelchairs and walkers may also be needed to aid the patient in retaining some amount of freedom.

  • The Disorder Can Cause Malnutrition And Difficulty Breathing

    The Disorder Can Cause Malnutrition And Difficulty Breathing
    Photo: jarmoluk / Pixabay / CC0

    When doctors say FOP takes over muscles and connective tissue, they are also referring to those that exist in the jaw. This leads to a hardening of the muscles in the face, which creates a reduced ability to open and close one's mouth. When this happens, it is very easy for someone with FOP to suffer from malnutrition.

    Another part of the body impacted by the disease is the area around the ribcage. Since the ribcage uses the cartilage connections within itself to expand and contract with the lungs, FOP can negatively impact a patient's ability to breathe. In fact, studies show most passings that occur in people with FOP are from cardio-respiratory failure caused by this restriction.

  • Muscle Damage Can Lead To An Increase In Ossification

    People bump themselves on furniture or fall all of the time, and they get a bruise or a bone that is broken as a result. Even if the break is severe, it will eventually heal. This isn't the case of people who suffer from this calcifying condition. People with FOP who fall down or bump their leg are likely to intensify the ossification of their body at the point of impact.

    Children and adults who have FOP have to stop playing sports to avoid advancing the rate of their disease progression. At some point, most sufferers become bedridden and have to rely on the help of others to get by, but avoiding dangerous situations where harm is likely can push that eventuality further into their future.

    Another culprit which triggers flare-ups of ossification is a simple virus. If someone with FOP gets the flu or other viral illness, it can kickstart their disease.

  • Surgery Would Only Make The Disease Worse For The Sufferer

    In the past, doctors have attempted to remove the calcified tissue from the body of people with FOP. They soon realized the traumatic nature of surgery was a catalyst triggering the growth of new bone. Surgery is not an option for FOP sufferers. 

    Unfortunately, many people have to have surgery in the course of their lives. Any time someone with FOP does require surgery, it is almost guaranteed the procedure will prompt a calcifying reaction.

  • This Disorder Is Exceedingly Rare

    Though a 50% chance of passing on a genetic disorder nicknamed "stone man syndrome" may sound frightening, the disease is actually very rare. The US National Institutes of Health released statistics stating only 1 out of every 2 million people in the world suffer from FOP.

    The United States is home to 285 of the 800 worldwide confirmed cases. Experts believe the number of people with FOP is higher, but they are undiagnosed or unable to see a doctor about their condition.

  • Researchers Have Found Success In Stopping The Disease With An Antibody Tested On Mice

    Researchers Have Found Success In Stopping The Disease With An Antibody Tested On Mice
    Photo: sipa / Pixabay / CC0

    Researchers have been looking for a real treatment for FOP for many years. In September 2015, it was announced scientists at Regeneron Pharmaceuticals had developed an antibody to counteract the disease. Lab mice who were given the disease by researchers were also injected with the newly created antibody. The progression of the disease in the mice was stopped, and researchers are hoping the antibody will have the same effect on human subjects. 

    Palovarotene, which is being developed by Clementia, also hopes to block the formation of bone in places where it does not belong. With continued research, hopefully there will be a cure for fibrodysplasia ossificans progressiva. Currently, Clementia is seeking FDA approval for this potential treatment.