Moebius syndrome is a rare birth defect caused by the absence or underdevelopment of the 6th and 7th cranial nerves, which control eye movements and facial expression. Many of the other cranial nerves may also be affected, including the 3rd, 5th, 8th, 9th, 11th and 12th. The first symptom, present at birth, is an inability to suck. Other symptoms can include: feeding, swallowing, and choking problems; excessive drooling; crossed eyes; lack of facial expression; inability to smile; eye sensitivity; motor delays; high or cleft palate; hearing problems and speech difficulties. Children with Moebius syndrome are unable to move their eyes back and forth. Decreased numbers of muscle fibers have been reported. Deformities of the tongue, jaw, and limbs, such as clubfoot and missing or webbed fingers, may also occur. As children get older, lack of facial expression and inability to smile become the dominant visible symptoms. Approximately 30 to 40 percent of children with Moebius syndrome have some degree of autism.
There are four recognized categories of Moebius syndrome:
There is no specific course of treatment for Moebius syndrome. Treatment is supportive and in accordance with symptoms. Infants
may require feeding tubes or special bottles to maintain sufficient nutrition. Surgery may correct crossed eyes and improve
limb and jaw deformities. Physical and speech therapy often improves motor skills and coordination, and leads to better control
of speaking and eating abilities. Plastic reconstructive surgery may be beneficial in some individuals. Nerve and muscle transfers
to the corners of the mouth have been performed to provide limited ability to smile.
There is no cure for Moebius syndrome. In spite of the impairments that characterize the disorder, proper care and treatment
give many individuals a normal life expectancy.
The NINDS conducts and supports a broad range of research on neurogenetic disorders, including Moebius syndrome. The goals
of these studies are to develop improved techniques to diagnose, treat, and eventually cure these disorders.
Moebius Syndrome Foundation P.O. Box 147 Pilot Grove, MO 65276 vickimc@iland.net http://www.moebiussyndrome.com Tel: 660-834-3406 |
March of Dimes 1275 Mamaroneck Avenue White Plains, NY 10605 askus@marchofdimes.com http://www.marchofdimes.com Tel: 914-997-4488 888-MODIMES (663-4637) Fax: 914-428-8203 |
Children's Craniofacial Association 13140 Coit Road Suite 517 Dallas, TX 75240 contactCCA@ccakids.com http://www.ccakids.com Tel: 800-535-3643 214-570-9099 Fax: 214-570-8811 |
National Organization for Rare Disorders (NORD) 55 Kenosia Avenue Danbury, CT 06810 orphan@rarediseases.org http://www.rarediseases.org Tel: 203-744-0100 Voice Mail 800-999-NORD (6673) Fax: 203-798-2291 |
Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892
NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.
All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.
Last updated June 23, 2011