Fibrodysplasia
Ossificans Progressiva
symptoms
FOP often begins in the
neck and shoulders and progresses along the back, trunk, and limbs of the body.
Malformed big toes are always correlated with the condition and can be observed
as early as birth. Another symptom is that rather than crawl with their hands
and knees, most kids with FOP scoot on their butt; then get up and walk. Although FOP starts before birth, the
extra bone does not form before birth only after birth. Other symptoms of FOP,
including bone formation (usually begin during the first two decades of life), 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. In each case, the exact rate
of progression is not predictable, but there appears to be a pattern to the
progression.
outlook
FOP is a very rare disorder, believed to
occur in approximately 1 in 2 million people worldwide. Only Several hundred
cases have been reported. This condition can be inherited because of one
copy of the altered gene in each cell is sufficient to cause the disorder.
These cases occur in people with no history of the disorder in their family. In
a small number of cases, an affected person has inherited the mutation from one
affected parent. Fibrodysplasia ossificans progressiva has a poor prognosis.
symptoms
FOP often begins in the
neck and shoulders and progresses along the back, trunk, and limbs of the body.
Malformed big toes are always correlated with the condition and can be observed
as early as birth. Another symptom is that rather than crawl with their hands
and knees, most kids with FOP scoot on their butt; then get up and walk. Although FOP starts before birth, the
extra bone does not form before birth only after birth. Other symptoms of FOP,
including bone formation (usually begin during the first two decades of life), 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. In each case, the exact rate
of progression is not predictable, but there appears to be a pattern to the
progression.
treatments
Doctors that may help:
- Neuromusculoskeletal Medicine
- Orthopedic Surgery
- Family Practice
- Pediatrics (Child Health Specialist)
- Adolescent Medicine (Teen Health)
- Geriatric Medicine (Senior Health)
- Internal Medicine
There is no successful cure for FOP but
it is hoped that future studies will pinpoint the mutation occurring in FOP and
lead to a better understanding of the disease’s mechanism. Fibrodysplasia
ossificans progressiva has a poor prognosis.
http://ghr.nlm.nih.gov/condition/fibrodysplasia-ossificans-progressiva
http://www.ifopa.org/fop-fact-sheet.html
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