2018.12.09 00:39
https://nam04.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.nytimes.com%2F2018%2F12%2F07%2Ffashion%2Fweddings%2Ffor-couple-with-moebius-syndrome-love-is-expressed-from-the-heart.html%3Fsmid%3Dnytcore-ipad-share%26smprod%3Dnytcore-ipad&data=02%7C01%7C%7Cd469b2a651a24dc57bce08d65deb5ed6%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C636799662812962179&sdata=8QL2vKUzlS2GRIi5gYegUBdUiI99EP%2BHlBQGMApmT20%3D&reserved=0
The bride and groom met through a Facebook community created for those afflicted with a rare neurological disorder that causes facial paralysis.
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What is Moebius syndrome?
Moebius syndrome is a nonprogressive craniofacial/neurological disorder where the 6th and 7th cranial nerves are not present. The syndrome manifests itself primarily in facial paralysis. Individuals with Moebius syndrome cannot smile or frown, and do not have lateral eye movements. Many individuals with Moebius syndrome also have skeletal involvement with limb abnormalities or Poland syndrome. People with Moebius syndrome can have respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders, weak upper body strength and autism spectrum disorders.
Many people with Moebius syndrome are born with a small chin (micrognathia) and a small mouth (microstomia) with a short or unusually shaped tongue. The roof of the mouth may have an abnormal opening (cleft palate) or be high and arched. These abnormalities contribute to problems with speech, which occur in many children with Moebius syndrome. Dental abnormalities, including missing and misaligned teeth, are also common. (credit to http://ghr.nlm.nih.gov/condition/moebius-syndrome)
Other cranial nerves (3rd, 4th, 5th, 9th, 10th and 12th) may also be affected, causing skeletal involvement causing hand/feet anomalies and/or club feet. Although they may crawl and walk later, most children with Moebius Syndrome eventually catch up.
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.
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.
The causes of Moebius syndrome are unknown, although the condition probably results from a combination of environmental and genetic factors. Researchers estimate that the condition affects 2 to 20 per 1 million people.
Symptoms
• 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 the tongue
• Submucous cleft palate
• Dental problems
• Hearing impairment
• Articulation / speech disorders
• Minor mid-line anomalies
• Club feet
• Hand/feet deformities(from Internet)