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"So what is Moebius Syndrome?" - Feb. 2, 2012

To follow up on our last post about Hannah's diagnosis, we wanted to provide the following common questions and answers about Moebius Syndrome. Our goal is to help educate everyone in our family and our circle of friends about the syndrome so they can be more understanding about what Hannah is going through now, and what challenges may lie ahead for her. We hope this helps, and if you have any other questions, just email us and let us know. Now for the Q&A:

What is Moebius?
Moebius is a rare syndrome which is present at birth and remains throughout a person's life. It causes varying degrees of facial paralysis, making a person unable to move most, if not all of the muscles in their face including the forehead, eyes, cheeks and mouth. It also makes the eyes unable to move from side to side, meaning that someone with Moebius has to turn their whole head to see things around them. One "official" definition from the Moebius Syndrome Foundation website describes the syndrome this way:
"Moebius syndrome is a rare neurological disorder that is present at birth.  It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they can’t smile, frown, suck, grimace or blink their eyes) and unable to move their eyes laterally. Other cranial nerves may be affected, especially the 3rd, 4th, 5th, 9th, 10th and 12th.  There may be skeletal involvement causing hand/feet anomalies and/or club feet. Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders, and weak upper body strength may also be present."

What Causes It?
Nothing official seems to be agreed upon in the research community. Some suggest that it is a random, genetic occurrence while others suggest some sort of trauma or drug use during pregnancy causes it. Although Wikipedia is not the best source of medical information, they do have an interesting review of the various ideas about what might cause Moebius:öbius_syndrome

Can Something be Done to Fix It?

Not really. Because it has to do with cranial nerves, there is no amount of therapy that can be done to regain muscle control that was never there in the first place. Still, there have been many attempts to "improve" a person's appearance through surgical procedures. The most common is something called a smile surgery where doctors take the gracillis muscles out of the thighs and transplant them to the cheeks. This allows people with Moebius to consciously move the corners of their mouth outward, giving the appearance of a "half-smile", even though the rest of their face still remains motionless. Some people with Moebius have also had various types of cosmetic surgery to help lift parts of their face that are drooping due to the lack of muscle control. Ultimately, the decision of surgery is a personal one and not all people with Moebius opt to get it for various personal or medical reasons.

Are People with Moebius Mentally Challenged?
No. While it's true that people with Moebius have a 30% chance of also having Autism in some degree, the majority of people with Moebius have no intellectual differences whatsoever. Still, it can be hard for people with Moebius to escape the initial assumption that they are mentally challenged because of the appearance of their face, and sometimes the additional presence of a noticeable speech difference.

Does it Affect Anything Besides the Face?
Yes; there are lots of ways that Moebius affects a person aside from the inability to smile or form expressions on their face. Some of them are minor conditions, or can be corrected with surgery and/or therapy, while other conditions can be more permanent and just part of who they are. Here are some of the more common things that can be present with Moebius:
• Feeding and swallowing problems
• Eye sensitivity / inability to squint
• Motor delays due to upper body weakness
• Absence of lateral eye movement and blinking
• Strabismus (crossed eyes)
• High palate from the inability to suck
• Dental problems
• Affected movement of tongue
• Articulation / speech disorders
• Club feet
• Hand/feet deformities

How Common is It?
Compared to other syndromes, there are relatively few cases of Moebius around the world. Wikipedia quotes a statistic of between 2-20 cases per one million births, however Moebius is often left undiagnosed as most doctors are not familiar with it.

Can it Be Passed Down to Offspring?
It can; some sources say there's up to a 50% chance that it will be present in the child of a parent who has Moebius while other quote much smaller percentages.

To learn more about Moebius, the website for the Moebius Syndrome Foundation is a great place to turn:


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