FOP Symptoms
Fibrodysplasia Ossificans Progressiva (FOP) often begins in the
neck and shoulders and progresses along the back, trunk, and limbs of the body.
In addition, malformed big toes (short, bent, and sometimes
curved inward) are always associated with the condition and can be observed at
birth. While the toe malformations cause few problems, they serve as an
important early sign of FOP before the onset of extra bone.
Rather than crawl on their hands and knees, most kids with FOP
scoot on their buttocks; then get up and walk. The reason that most cannot
crawl is because the facet joints in the back of the neck have not formed
properly or have fused, thus limiting movement.
Although FOP is congenital, meaning that FOP starts before
birth, the extra bone does not form before birth.
Symptoms of FOP, including bone formation, usually begin during
the first decades of life.
The majority of affected people learn that they have FOP before
the age of ten. Inflamed (and sometimes painful) swellings, typically in the
shoulder and back areas and sometimes on the scalp or head, are usually the
first sign of FOP. The swellings eventually clear up, but they leave behind a
new piece of mature bone.
People who have FOP experience different rates of new bone
formation. In some the progress is rapid, while in others it is more gradual.
In each case, the exact rate of progression is unpredictable, although there
appears to be a pattern to the progression.
For example, extra bone
formation tends to occur in the neck, shoulders, and upper back early in life
and in the hips and knees during adolescence or early adulthood.
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