There are some rare diseases that exist in
the world that sound like something from a horror movie. Imagine you had a water allergy, which meant
drinking water would cause severe pain, or if water touched your skin it would cause
you to develop a painful rash. It exists, and it’s called “aquagenic
urticaria.” Or what about experiencing “Laughing Death,”
Also known as Kura disease? That should be self-explanatory. Then there’s “Morgellons disease”, a
feeling that insects are chewing, nibbling or crawling on your skin. That would be enough to drive you crazy, and
there are some experts out there that say it’s not actually a physical disease, rather
it’s a kind of delusional psychosis. Today we are going to concentrate on one of
the strangest diseases known to mankind, in this episode of the Infographics Show, What
Is Stone Man syndrome? Don’t forget to subscribe and click the
bell button so that you can be part of our Notification Squad. Stone man syndrome is kind of a crude term
given to a disease known as fibrodysplasia ossificans progressiva, also known as FOP. It’s thought that the disease affects only
one in every 2 million people worldwide, according to the U.S. National Institutes of Health…
and you really don’t want to be one of those unfortunate people. If you have it, despite what you might be
thinking, you don’t actually turn into stone like something from a fantasy movie. Let us explain. All humans start developing bone when they
are in the fetal stage of life, and they continue to grow up until a certain point in their
development, stopping growing when the child becomes an adult. Bones grow as cartilage and muscle in the
body is ossified. The process of ossification in the dictionary,
is described as being the hardening of muscle tissue until it becomes bone. That’s how your bones grow, and your body
knows when this process should end. Unlucky for some, that is not always the case. Their bones do not stop growing, and over
the skeleton another skeleton grows. This is known as heterotopic ossification. There is nothing doctors can do to stop this. People can survive a good few years with this
disease, and we will talk about some of them later. One terrible thing for these people is they
must be very careful what they do in life, as one small injury, even a kick in the leg,
can cause more bone growth. It’s thought the reason why injuries can
cause fast growth is because the immune system goes to work as it should after an injury,
only for these people they have an excess of help. When you have stone man syndrome, when the
muscles, tendons, or ligaments get damaged, bone growth can, or most likely will, occur. These are known as flare-ups, although the
disease causes extra bone growth without such flare-ups. The extreme bone growth happens first on the
upper part of the body, spreading to other parts of the body as the child grows into
an adult. This can have devastating consequences, not
only affecting the mobility of the sufferer, but sometimes making it hard to speak, eat,
or worse, breathe. That’s due to the rib cage being extended
by bone growth. Even worse, when surgeons have removed the
extra bone, it only grows back, and at a much faster rate, too. It seems the body just won’t have it any
other way. As for the cause, that was only discovered
in 2006 after a long-time of professionals not knowing what was going on. It’s like this. Something called the ACVR1 gene gives instructions
for producing bone morphogenetic protein type 1 receptors. This protein controls the development of bones. In sufferers of stone man syndrome, a mutation
occurs which basically causes more of this protein to activate when it should not. There is a much longer and more complex explanation
of this, but it’s too complicated to explain here. This strange gene mutation is not something
parents can prevent, or doctors can detect when the child is in the womb, although it’s
thought a few cases have been hereditary. According to a rare disease website, “Most
patients with FOP are bedridden by age 20 and have a life expectancy of 40 years.” Even those that seem to cope the best with
the disease shouldn’t ever play contact sports as kids, and they should be careful
all day every day not to bang into things. The smallest injury can create more bone growth. As FOP progresses, most patients will be bedbound
and will need constant caring. One better-known case was that of Harry Eastlack,
in the early to mid-20th century. In a way he did turn to stone, and at the
end of his life could only move his lips. A more recent case that captured the attention
of the world was that of Seanie Nammock, from England. She was interviewed in 2014 when she was just
18. She was busy studying her A-levels, although,
as the media put it, she would eventually be “turned into a statue.” Her neck and back at the time were already
so affected by the extra bone growth that she could not move her hands above her waist. “It doesn’t help that I’m accident-prone,”
the girl told The Mirror newspaper, “I’m always falling up or downstairs because I
can’t hold the bannister. My balance is also a problem because of the
way my arms are locked. I can’t put them down to break my fall either
– so it can be really scary.” That didn’t stop her gaining 10 GCSEs, five
of them with an A grade. Also, in the UK, one year later, 23-year old
Whitney Wheldon was interviewed about living with the condition. The girl’s disease had progressed further
than the previous girl’s, and now she is wheelchair bound and struggles to move her
head. She told the Express newspaper that she still
goes out to the pub with friends, stating that she had been very active as a child. Now, she says, “I stay positive and don't
think about my body turning to stone.” Is there any hope for these people? The American media reported in 2015 that indeed
there is. It seems that researchers are closer now to
developing an antibody that stops the ACVR1 gene from giving the instructions to form
new bone. Lab mice that were genetically engineered
to have the disease were given this antibody and the extra bone formation stopped. Up until now FOP victims have only been able
to take medicines that helped with pain, but it seems we may be on the verge of finding
a way to heal FOP. The downside is that many studies that involve
animals don’t show the same results in humans, and two years later we cannot find any updated
news concerning the progress of this healing antibody. We will leave this show on a positive note,
though, and one of the most recent cases of FOP to hit the media. That is the case of 11-year old Caleb Burgess
from Castle Rock, Colorado. The boy started suffering from neck pains
when he was just seven years old, but at eleven he was still active and enjoyed playing baseball
– although understandingly playing it the safest way possible. His mother said he was a happy kid, but knowing
what he has – especially with the stigma of a name such as stone man syndrome – can
get him down. “We have FOP fact sheets that tell us the
worse possible case. Those he does not like. Other than that, he is pretty positive and
happy,” his mother told Fox News in 2017. So, what are your thoughts on this disease? How would you deal with it, if need be? And doesn't it sound a little like the Greyscale
Infection in Game of Thrones? Let us know in the comments! Also, be sure to check out our other video
called The Most Painful Things a Human Can Experience! Thanks for watching, and, as always, don’t
forget to like, share, and subscribe. See you next time!
