Random Things of This Syndrome Will Slowly Turn You To 'Stone' (10 items)

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  (#10) People With The Disease Can Live Into Adulthood

  The life expectancy for someone with FOP is 40 years. Most patients see their bones fuse and become virtually immobile by age 20. Some people with the disease continue to live and thrive with the help of a wheelchair and a caregiver.

  Whitney Weldon of New Jersey is a woman who was able to attend and graduate from college despite suffering from the disease. Her movements are limited and she has someone to assist her with daily activities, such as cooking and bathing. Weldon continues to hang out with her friends, swim, and enjoy other activities with minimal chance of harm.
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  (#8) It Is A Genetic Disease And Can Be Inherited From A Parent

  The disease is caused by the ACVR1 gene. This gene tells your body how to use bone morphogenetic protein (BMP) type I receptors to build bones. When it is mutated, it is believed a switch is flipped in the gene to have receptors turned on at all times. If the ACVR1 gene is constantly telling BMP type I receptors to build bones, it will eventually run out of cartilage to use, so it moves on to the soft tissue in the body.

  There is a 50% chance of a parent with this gene passing it along to a child. In other cases, the person suffering from FOP has no familial history of the disease - they simply have a new mutation of the gene in their DNA. 
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  (#2) The Disorder Can Cause Malnutrition And Difficulty Breathing

  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.
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  (#5) 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.
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  (#1) It Turns Soft Tissue Into Bone Throughout The Body

  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.
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  (#7) FOP Begins To Show Itself During Early Childhood

  The first sign of FOP is a malformed big toe on a newborn baby. The disease causes the toe to be shorter than normal and unnaturally turned. This is called valgus deviation. As the child continues to grow, they may have lots of painful spots on their neck and shoulder area. These are places where the tissues are being taken over and turned into bone. The creation of the bone causes the child to be in great pain.

  Joint swelling, a low-grade fever, and general discomfort are all symptoms of this diabolical disease. These symptoms can come in the form of flare-ups, which can last up to 6-8 weeks. 

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