Moebius Syndrome is a rare neurological disorder is congenital and non-progressive. It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they are unable to smile, suck, frown, grimace or blink) and the inability to move their eyes laterally.
Other cranial nerves that may be affected are the 3rd, 4th, 5th, 9th, 10th and 12th.
There may be skeletal involvement causing hand/feet anomalies and/or club foot.
Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, and weakness of upper body strength may also be present.
Some children with Moebius syndrome are also on the autism spectrum
The most apparent symptoms are related to facial expressions and function. In newborn infants, the first sign is an impaired ability to suck. Excessive drooling and crossed eyes may be present. In addition, there can be deformities of the tongue and jaw, and even of some limbs, including club foot and missing or webbed fingers. Most children have low muscle tone, particularly of the upper body. CT and MRI of brain may be entirely normal or may show symmetrical punctate calcification and brainstem hypoplasia (1)
SYMPTOMS MAY INCLUDE:
Although they 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 lips. As children get older, the lack of facial expression and an inability to smile become the dominant visible symptoms.
Moebius Syndrome is sometimes accompanied by Pierre Robin Syndrome and Poland's Anomaly.
Children are born with Moebius Syndrome. Although it appears to be genetic, its precise cause remains unknown and the medical literature presents conflicting theories. It affects boys and girls equally, and there appears to be, in some cases, an increased risk of transmitting the disorder from an affected parent to a child. Although no prenatal test for Moebius Syndrome is currently available, individuals may benefit from genetic counseling.
Infants sometimes require special bottles or feeding tubes to maintain sufficient nutrition. Strabismus (crossed eyes) is usually correctable with surgery.
Children with Moebius Syndrome can also benefit from physical and speech therapy to improve their gross motor skills and coordination, and to gain better control over speaking and eating.
Limb and jaw deformities may often be improved through surgery. In addition, In some cases, nerve and muscle transfers to the corners of the mouth have been performed to provide an ability to smile.
RESEARCH & AWARENESS
One of the most frustrating aspects of coping with Moebius Syndrome is the surprising lack of awareness among physicians and nurses. It occurs so infrequently that many children go undiagnosed for months and sometimes years after their birth. Parents and those affected spend a lot of time and emotional energy explaining and re-explaining this rare condition.
The rarity of Moebius Syndrome becomes, in effect, an additional complication of the disorder. Because so few members of the professional and lay public have even heard of Moebius Syndrome, medical and social support, as well as reimbursement from insurance companies, are severely limited.
This lack of support services puts additional burdens on individuals and their families in their attempts to cope with Moebius Syndrome.
Lack of awareness also plays a role in limiting research into potential treatments and cures for Moebius Syndrome
Reference: www.moebiussyndrome.com with kind permission from Vicki McCarrol.
1. CherylAnnePalmer. Moebiussyndrome http:/www.emedicine.com/neuro/topic612.htm
Karin Thompson - Manager
Julie Cronk - Assistant Manager
Please feel free to email me any time if you have any questions about the website or need help signing in.