Moebius Syndrome Awareness Day: Learn more about the rare disorder
On January 24th, people from all walks of life hope to spread awareness of the rare neurological disorder known as Moebius Syndrome. Many people are unaware of this disorder because of the rarity and so Moebius Syndrome Awareness Day hopes to change that.
Discover the smile behind the face and learn more about Moebius Syndrome here.
What is Moebius Syndrome?
This syndrome is a rare neurological disorder that’s usually present at birth. People born with Moebius are unable to blink, frown, suck or even smile. It is characterized by weakening or paralysis of the muscles in the face which control expression and lateral eye movements.
The sixth and seventh cranial nerves are pairs of nerves (one on each side of the face) that send messages from the brain and are responsible for certain facial movements and sensory functions. With Moebius Syndrome, these nerves don’t develop properly or are absent.
Other physical problems are sometimes present in people with Moebius Syndrome, such as clubfoot, mouth, tongue & jaw deformities, and respiratory illnesses. German physician Paul Julius Möbius described the condition in 1888 and that’s where the name originates.
Symptoms of Moebius Syndrome
The symptoms of Moebius Syndrome can be different for every person diagnosed. Here are some problems associated with Moebius Syndrome:
- Visual impairment, corneal erosion (due to inability to blink), and sensitivity to light (due to inability to squint).
- Problems with feeding, swallowing, and choking.
- Speech difficulties (due to impairment of lip function, reduced tongue function, cleft palate and reduced soft palate mobility).
- Frequent ear infections (due to the function of the Eustachian tube being affected).
- Dental problems: teeth may be missing or be overcrowded due to the small size of the lower jaw. The reduction in mouth muscle movement results in less natural self-cleaning and can increase the risk of dental cavities and gum disease.
- A delay in development of motor skills, such as crawling and walking, although most children with Moebius syndrome do catch up.
- Psychological problems, particularly as the lack of facial expression can sometimes incorrectly be assumed by others to be due to unfriendliness or lack of intelligence.
I am a Film Daily author, but what some may not know about me is I was diagnosed with Moebius Syndrome a year after I was born. As an infant, I was unable to smile or move my face in any capacity so my mother took me to a doctor who gave me the diagnosis.
I am affected in a variety of ways including limited facial expressions, psychological problems, problems with feeding, some speech difficulties, and lack of blinking. This syndrome has caused a lot of problems growing up and prejudice is certainly the most challenging.
Not only did children treat me differently, but so did adults. Amongst a variety of hobbies, singing became a method of escapism growing up and music was the key. Unfortunately, due to my limited facial movement, many teachers assumed I’d be unable to perform efficiently. I proved them wrong when I performed in auditions, won talent shows, and achieved A’s in music exams.
As I’ve got older, I’ve been able to cope with a number of hateful comments and I’ve grown into a strong adult. My Moebius is very mild in comparison to others who are affected and for that, I’m forever grateful. I want to use my platform to not only spread awareness but be a voice for those who are diagnosed and perhaps feel alone.
Every heart is unique and we’re all born different. Embracing your uniqueness is powerful and you’re never truly alone. We’re all in this together. Let’s paint the world purple!
Help spread awareness of Moebius syndrome and learn more about this rare disorder now. Share your stories in the comments.
Rianna, this is a fantastic article! Thank you for raising more awareness about Moebius syndrome.January 26, 2021
Rianna de Bono-Smith / Author
Thank you so much! I want to make sure other people who have Moebius syndrome can tell their stories so I told mine. Let’s pain the world purple!January 26, 2021
I was born with moebius syndrome in 1964. It went undiagnosed. My parents thought I only chewed and talked out one side of my mouth out of habit. They tried to break my habit…. I am only affected on one side of my face. I can’t move my mouth on that side. I can’t smile. I can’t raise my eye brow on that side either. My eyes also cross if I look to the side without moving my head. Not being able to smile is awful..January 26, 2021
Rianna de Bono-Smith / Author
Thank you for sharing your story. I understand how difficult it can be and I’m proud we can spread awareness of this syndrome.January 27, 2021