What is Moebius syndrome ?
The Moebius Syndrome, is very rare. Many doctors, also, have
never heard of it.
It is estimated that Brazil
has 600 cases and in United States the cases amount to 1,000.
Moebius syndrome is characterized
by peripheral facial paralysis, in general laterally, paralysis
of the VI pair, atrophy of tongue muscle and other muscular and
bone anomalies, more frequently located in distal parts of superior
and inferior extremities
The facial alterations that
Moebius-affected children make them have an inexpressive aspect,
without any facial movements, so that demonstrations of happiness,
sadness, pain and other emotions are only made possible to detect
through sound. They also keep their mouths half open and with
the attempt of closing their eyes, an non-esthetic marked aspect
appears with the Bell sign.
All expression alterations
and physical deformations related to them certainly cause emotional
disturbances which may be confused with a certain degree of mental
illness which, in fact, they do not have.
If there is a wrong diagnosis,
these patients undergo misconducted psychological treatments.
Main characteristics of Moebius
- deformation or even atrophy
of limbs (bend feet, absence of toes or fingers);
- partial or generalized
paralysis of nerves on the face. Thus, the child does not blink,
- Does not chew, blow, speak
properly and mainly does not smile or show
any facial expressions;
No cases are know which characterize
that the brain has been affected. They are mentally perfect and
extremely intelligent children.
The treatment includes corrective
surgery (orthopedics and strabismus) rehabilitation and mainly
dedication and stimulus
Recently a pioneer surgery
has been performed (in the case of Moebius) of implant of nerves
on the face of the girl Chelsey Thomas at the Kaiser Permanent
Hospital, Los Angeles, CA, U.S.A
So, we need help to collect
funds and create conditions so that these children, together with
their parents, can be oriented and have proper follow-up.