Get to Know Moebius Syndrome: The Rare Condition Affecting 1 in 50,000

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This is an awareness post, highlighting Moebius syndrome, a rare neurological condition.

What is Moebius syndrome

Moebius syndrome is a rare congenital (present at birth) neurological disorder that affects the facial muscles. It occurs in about 2 to 20 people per million births. 1 in 50,000 is the lower end of numbers. All ethnicities have this syndrome, and both males and females are affected equally.

Moebius syndrome may be caused by a disorder of the 6th and 7th cranial nerves, with many other cranial nerves affected, including the 3rd, 5th, 8th, 9th, 11th and 12th. There are suspected genetic origins as well.

What are the Symptoms?

Symptoms of Moebius syndrome include paralysis of the facial muscles, crossed eyes, and difficulty swallowing. It can cause difficultly with speaking and eating, as well as physical issues such as underdeveloped ears and eyes crossing.

In order for a diagnosis of Moebius syndrome to be made, two strict criteria must be met:

1) Congenital (occurring from birth), non-progressive congenital facial weakness

2) Inability to abduct (move the eye away from the nose) one or both eyes

Both criteria must be present for a diagnosis of Moebius syndrome. These two symptoms may be due to impairment in the facial nerve (cranial nerve 7) and the abducens nerve (cranial nerve 6).

In addition to the above strict clinical criteria, additional signs or symptoms may also be present, including, but not limited to:

• Other cranial nerve involvement
• Strabismus (misalignment of the eyes)
• Hearing loss
• Club foot
• Limb reduction deficits
• Other limb anomalies
• Poland anomaly
• Muscular hypotonia
• Congenital heart disease
• Developmental delay/ intellectual disability
• Autism

What Causes Moebius Syndrome?

The exact cause of Moebius syndrome is unknown, but it is believed to be caused by a combination of genetic and environmental factors.

It is known that it is associated with abnormal gene activity or poor blood circulation during the first trimester of pregnancy.

Is There a Cure?

There is no known cure at this time.

Who Discovered It?

Moebius syndrome was originally described by German ophthalmologist Alfred Graefe in 1880, but is named for German neurologist Paul Julius Moebius, who reported features of this condition in 1888.

What Are the Treatment Options for Moebius syndrome?

Treatment focuses on managing the symptoms and complications. Those treatment options usually involve therapy and medications for joint pain, muscle spasms, and sleep problems

Physical therapy is also used in treating Moebius syndrome, as it can help prevent contractures. Speech therapy can also be helpful.

Reconstructive surgery is also used as a treatment in some cases. This is is still in it’s infancy – there is still a great deal to be learned about it. It also brings to head conflicting thoughts and feelings regarding disability pride, the necessity (or not) of changing oneself to “fit in” mainstream culture.

People with Moebius syndrome Can Have Great Lives!

Like any other disability, people with Moebius syndrome can have great lives! It simply a condition and it does not mean life with Moebius syndrome is not worth living.

Check out this great interview with a women (who is a mother) with Moebius syndrome. Please note how the interviewers seem to pity her and seem to be encouraging her to talk about her life like it’s sad or she should have surgery to change herself, and note her response:

Disability pride is something that all of us across the disability spectrum benefit from.

Moebius syndrome Awareness Day is January 24th.

January 24th is Moebius Syndrome Awareness Day! Take some time to learn about this rare syndrome and show your support.

Let’s increase recognition, understanding and respect for those affected by Moebius syndrome.

Cool story: Couple with Möebius syndrome meet and get engaged

Meet Katja, from the Same But Different project

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