Moebius Syndrome Foundation Administration

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What is Moebius Syndrome?

Moebius syndrome is a rare neurological disorder that is present at birth.  It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they can’t smile, frown, suck, grimace or blink their eyes) and unable to move their eyes laterally. 
Other cranial nerves may be affected, especially the 3rd, 4th, 5th, 9th, 10th and 12th.  There may be skeletal involvement causing hand/feet anomalies and/or club feet. Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders, and weak upper body strength may also be present.  Approximately 30% of children with Moebius syndrome are on the autism spectrum.

Symptoms May Include:

  • Lack of facial expression; inability to smile
  • Feeding, swallowing and choking problems
  • Keeping head back to swallow
  • Eye sensitivity due to inability to squint
  • Motor delays due to upper body weakness
  • Absence of lateral eye movement
  • Absence of blinking
  • Strabismus (crossed eyes)
  • Drooling
  • High palate
  • Short or deformed tongue
  • Limited movement of tongue
  • Submucous cleft palate
  • Dental problems
  • Hearing impairment
  • Articulation / speech disorders
  • Minor mid-line anomalies
  • Club feet
  • Hand/feet deformities

Although they may crawl and walk later, most children with Moebius Syndrome eventually catch up.  Speech problems often respond to therapy, but may persist due to impaired mobility of the tongue and/or mouth. As children get older, the lack of facial expression and an inability to smile may become the dominant visible symptoms. Moebius Syndrome is sometimes but usually infrequently, accompanied by Pierre Robin Syndrome and Poland's Anomaly.

How does it occur?

Moebius syndrome is thought to be genetic, and most cases are sporadic, occurring once in a family.  Research on the causes of Moebius Syndrome is not conclusive at this time.

How is it Treated?

Infants sometimes require special bottles (i.e. Special Needs or Pigeon Feeder) or feeding tubes to maintain sufficient nutrition. Strabismus (crossed eyes) is usually correctible with surgery. Children with Moebius syndrome usually benefit from physical and speech therapy to improve their gross motor skills and coordination, and to gain better control over speaking and eating, as well as occupational and sensory integration therapies.

Limb and jaw deformities may often be improved through surgery. In addition, plastic reconstructive surgery of the face can offer benefits in individual cases. In that surgery, nerve and muscle transfers to the corners of the mouth have been performed to provide an ability to smile. 

Detailed Information on the 12 Cranial Nerves



Events

11th Moebius Syndrome Conference
11th Moebius Syndrome Conference

Plan to attend the 11th Moebius Syndrome Conference, Friday through Sunday, July 18-20, 2014 in North Bethesda, Maryland, just outside of Washington, DC. The 2014 conference will take place at the Bethesda North Marriott Hotel & Conference Center.

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