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Advocate’s Avenue… Moebius Syndrome Awareness

Leslie McLeod: Guest Columnist

January 24th will be Moebius Syndrome Awareness Day. Moebius syndrome, also known as congenital facial diplegiais, is a rare, non-progressive neurological disorder affecting the muscles that control facial expression and eye movement. Signs and symptoms of this condition are present from birth. It is unknown what causes Moebius syndrome. It has been estimated that Moebius Syndrome affects 2 to 20 per 1 million people.

Individuals with Moebius syndrome are unable to smile or frown. This condition affects the muscles that control back-and-forth eye movement. This means that in order to read or follow any objects moving, the person has to move their head from side to side. People with this disorder also have difficulty making eye contact, and their eyes may not look in the same direction.

Individuals who are diagnosed with Moebius syndrome may also have respiratory problems. Speech and swallowing disorders can cause concerns as individuals with Moebius syndrome have feeding, swallowing and choking problems. In order to swallow, these individuals must keep their head back. Those affected may also have visual or hearing impairments and sensory integration dysfunction. Sleep disorders or difficulties may occur as eyelids may not close completely when blinking or sleeping, which can result in dry or irritated eyes. Children affected by Moebius syndrome may possibly experience delayed development of motor skills (such as crawling and walking) due to bone abnormalities in the hands and feet (club feet) and weak muscle tone.

Approximately 30% of children with Moebius syndrome are on the autism spectrum. This is due to children who have been diagnosed with Moebius syndrome being more likely to have characteristics of autism spectrum disorders. Because individuals with Moebius syndrome also have impaired communication and social interaction, difficulty with eye contact and speech due to their physical differences, autism spectrum disorders can be difficult to diagnose in these individuals.

While there have been small cases  of Moebius syndrome that have been reported to run in families, the majority of the cases are sporadic, showing there is not a single clear pattern of inheritance.

For more information on Moebius syndrome, check out http://moebiussyndrome.org/.

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