New advances and procedures concerning Moebius Syndrome are constantly being developed. Be an advocate for your child!
MOEBIUS SYNDROME
What is Moebius Syndrome?
Moebius Syndrome is an extremely rare condition which typically affects the sixth and seventh cranial nerves. These nerves affect the face and eye muscles and cause facial paralysis. Characteristics of Moebius Syndrome include:
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Impaired ability in infants to suck
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Inability to follow objects with one's eye -- instead the child turns his/her head to follow
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Lack of facial expression
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Crossed eyes
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Inability to smile
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Why did this happen?
Moebius Syndrome is caused by underdevelopment of facial nerves. Researchers believe that there is a genetic cause, but have not yet been able to identify it.
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Will this happen to children I have in the future?
The chances are very small that other children will also be born with Moebius. However, there appears to be an increased incidence of Moebius in children of parents with Moebius.
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What kinds of problems could my child have?
In addition to the physical characteristics common to Moebius, your child may have the following problems:
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Delayed crawling and/or walking due to low muscle tone
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Respiratory illnesses due to low muscle tone
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Speech problems
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Hearing problems caused by fluid in the ears
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Limited movement of the tongue
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Teeth problems
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Sensitivity to loud sounds
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Sensitivity to bright light
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Will my child need surgery?
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Strabismus (crossed eyes) is usually correctable with surgery.
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Nerve and muscle transfers have been successful in recent years in providing some ability to smile.
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Though not surgical in nature, children often benefit from physical and speech therapy to improve their gross motor skills and coordination, and to gain better control of speaking and eating.
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How do I get help for my child?
Your child should be treated by a qualified craniofacial medical team at a craniofacial center. Currently, FACES has information on many of these teams. This is by no means a comprehensive list of all the craniofacial teams.
Please Contact Us for details.
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Am I alone?
No! There are many families and organizations who will be glad to talk with you and help you with information and support. Don't forget books, videos, and websites. The information below will help you get started. (Facebook has dozens of private groups specific to conditions. Try searching Facebook with a few different key words such as "craniofacial" or "burn" and find groups of parents and others with similar differences.)
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FACES: The National Craniofacial Association
We provide financial support for non-medical expenses to patients traveling to a craniofacial center for treatment. Eligibility is based on financial and medical need (Apply Here). Resources include newsletters, information about craniofacial conditions, and networking opportunities. Contact Us for more information.
Office of Rare Diseases
The Genetic and Rare Diseases Information Center
Excellent web site for finding information on a variety of craniofacial disorders, particularly very rare ones. Information specialists are available to answer your questions. Telephone operation is Monday - Friday, 12 pm to 6 pm Eastern Time. Email or fax requests for information will be answered within 5-10 working days. U.S. Mail requests will be answered within 5-10 working days. NOTE: The center does not give medical advice, provide treatment, or diagnose illness.
Phone: (888) 205-2311
Website: rarediseases.info.nih.gov/diseases/8549/mobius-syndrome
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US National Library of Medicine
Your guide to understanding genetic conditions
Website: ghr.nlm.nih.gov/condition/moebius-syndrome
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Many Faces of Moebius Syndrome
"To create a better tomorrow for ourselves and children through education and public awareness."
Website: www.manyfacesofmoebiussyndrome.org/
Facebook Community: www.facebook.com/pages/Many-Faces-of-Moebius-Syndrome/189215821115287
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Moebius Syndrome Awareness Day
An event created by the Many Faces of Moebius Syndrome in 2011. It is held annually on the 24th of January, the birthdate of Professor Paul Julius Moebius, the doctor who first reported the disorder in 1888.
Website: www.moebiussyndromeawarenessday.com
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American Speech-Language-Hearing Association
Phone: 800-638-8255
Website: www.asha.org
Moebius Syndrome Foundation
Excellent Resource!! This network has a very informative newsletter and an address list of over 3,000 families and professionals who are willing to provide support. They host biennial national conferences, provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.
Phone: (844) 663-2487
Website: moebiussyndrome.org
Facebook Page: www.facebook.com/moebiussyndrome
Facebook Community Group: www.facebook.com/groups/1747904085515409
Facial Paralysis Program / Canada
www.sickkids.ca/PlasticSurgery/What-we-do/Facial-Paralysis/index.html
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National Health Law Program
Provides extensive information on health care law affecting families with children who have special health care needs.
Phone: (202) 289-7661
Website: healthlaw.org
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Worldwide Moebius Syndrome Map
A map showing where people with Moebius Syndrome live. If you would like to add yourself, please do!
Website: www.diseasemaps.org/moebius-syndrome
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Suggested Reading
Children with Facial Difference:
A Parent's Guide
Written by Hope Charkins, MSW. Excellent resource for parents to help them cope with medical, emotional, social, educational, legal, and financial challenges presented by facial differences of their children. Order from Amazon.com if you cannot find it in your local bookstore.
