General Child Neurology
Mar. 16, 2023
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Moebius syndrome is a rare birth defect that mainly affects the muscles that control facial expression and eye movement. It is caused by the absence or underdevelopment of the sixth and seventh cranial nerves, which control eye movements and facial expression.
The first symptom, present at birth, is an inability to suck from the mouth. Other symptoms may include:
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 main visible symptoms. Approximately 30 to 40 percent of children with Moebius syndrome have some degree of autism.
There is no cure for Moebius syndrome. In spite of the challenges that Moebius syndrome brings, people living with the disorder may have an average life expectancy if they get proper care and treatment.
There is no specific treatment for Moebius syndrome. Infants may require feeding tubes or special bottles to get enough nutrition. Surgery may correct crossed eyes; it may also improve limb and jaw deformities. Physical therapy and speech therapy often improve motor (movement) skills and coordination; these therapies can also lead to better control of speaking and eating. Plastic surgery may be helpful for some people with the disorder. Nerves and muscles can be transferred to the corners of the mouth, making it slightly easier for the person to smile.
How can I or my loved one help improve care for people with Moebius syndrome?
Moebius syndrome is considered a rare disorder, which often means there is not much information known about it. This is usually the case because doctors and researchers do not see many people with Moebius syndrome, which makes it hard to learn from them through observations or large studies.
Consider participating in a clinical trial so clinicians and scientists can learn more about Moebius syndrome and related disorders. Clinical research uses human volunteers to help researchers learn more about a disorder and perhaps find better ways to safely detect, treat, or prevent disease.
All types of volunteers are needed—those who are healthy or may have an illness or disease—of all different ages, sexes, races, and ethnicities to ensure that study results apply to as many people as possible, and that treatments will be safe and effective for everyone who will use them.
For information about participating in clinical research visit NIH Clinical Research Trials and You. Learn about clinical trials currently looking for people with Moebius syndrome at Clinicaltrials.gov.
Where can I find more information about Moebius syndrome?
The following organizations and resources help people with Moebius syndrome and their families, friends, and caregivers:
Children's Craniofacial Association
Phone: 800-535-3643 or 214-570-9099
March of Dimes
Moebius Syndrome Foundation
National Organization for Rare Disorders (NORD)
Phone: 203-744-0100 or 800-999-6673; 844-259-7178 Spanish
Content source: https://www.ninds.nih.gov/health-information/disorders/moebius-syndrome Accessed July 13, 2023.
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