2. What is FOP?
FOP is a very rare genetic disorder.
Around one in two million people
are born with it.
FOP is the only disease that can
change one organ system into
another. Muscles are turned into
bone.
3. What does it do?
FOP causes bone, ligaments, and
tendons to ossify, or transform into
bone. Joints are covered in bone,
and become immobile.
It has been nicknamed “Stone Man
Syndrome.”
4. What causes it?
The ACVR1 gene is used to ossify
cartilage. A mutation of this gene
causes FOP, where ossification is
not “turned off.”
Bones will grow unregulated and
replace muscles, joints, and
ligaments. This greatly limits
movement.
5. Signs & Symptoms
Painful lumps and malformed big toes and
thumbs can be early signs of FOP
Bone growths occur usually by early
childhood.
Anything from a fall, an immunization, or an
illness can trigger bone growth. Occasionally,
it has no trigger.
6. Treatments
There are no treatments for FOP.
Surgery makes it worse. Any bone
growth removed will grow back
even more, and new growths will
be stimulated.
8. Cases When Harry Eastlack was
10, he was diagnosed
with FOP.
By the time of his death
at 40, his body was
completely ossified, and
he could only move his
lips.
He donated his body to
science after he died, so a
cure could be found to
this disease.