Happy Moebius Syndrome Awareness Day (MSAD) 2021!
What is Moebius Syndrome?
Moebius syndrome causes the underdevelopment of the 6th and 7th cranial nerves, that affect lateral eye movement and facial expression. So, people with Moebius cannot fully move their eyes from side to side, or make facial expressions, like average people. Everyone with Moebius has these effects.
Other than that, Moebius affects people in different ways. Some people with Moebius, like me, have limb differences. I do not have fingers on my right hand, and I was born with a club foot (my left foot). My toes are also webbed on my left foot. I had surgery when I was about a year old, though, so my left foot is no longer club. My right foot is underdeveloped, and my feet in general are pretty tiny (size 2 in girls).
People with Moebius can also have different kinds/combinations of limb differences. Or, no limb differences at all.
Most people with Moebius, including me, can’t close their eyes all the way and can’t blink properly, so they struggle with dry eye. I’ve found lifestyle changes help manage this, like limiting reading/screen time, to avoid overstraining my eyes. Making sure I keep hydrated to help with lubrication. Using eye drops can help as well.
Some people with Moebius have more underdeveloped tongues than I do, so they struggle more with speech difficulties. I actually speak pretty clearly for having Moebius.
Moebius syndrome is very rare (roughly 2 to 20 cases per million births) and has no known cause.
Why is MSAD Celebrated on January 24th?
We celebrate Moebius Syndrome Awareness Day on January 24th to honor the birthdate of German neurologist Paul Julius Moebius, who reported features of Moebius syndrome in 1888.
What is My Quality of Life with Moebius Syndrome?
I had smile surgery when I was 16, so I am now able to smile. I don’t really think about my facial paralysis much because it hasn’t been that much of a hindrance in my life.
Due to my foot differences, I can’t stand for long periods of time or walk longer distances.
There’s not much I can think of that I can’t do one handed. I’m darn stubborn, so I pretty much find my own way to do things. It helps that I still have movement of my right wrist, even though I don’t have fingers on my right hand.
Sometimes my eyes do dry out and can get pretty sore and red, especially if I don’t sleep well.
I can only remember one time in sixth grade getting asked about my facial expression difference. The primary focus seems to be my hand that people notice, which can be quite uncomfortable at times. I get stared at *a lot*. I feel like I’m constantly on display, and for someone who’s more introverted, that can be challenging and anxiety provoking.
I feel conflicted because on the one hand (haha puns), I do agree that it’s good for people to ask questions, so they can gain more knowledge and understanding about Moebius. It depends how they approach it, though. If they come up to me more with the attitude of “what happened to your hand” in the sense of “what’s *wrong* with you/your hand”, I tend to be more off put, whereas if they come up to me with more of a curiosity/nonjudgmental vibe, that’s just so much more comfortable for me to open up about it.
And, honestly, sometimes I don’t want to be the poster child for Moebius syndrome and just want to go about my day. Even with the best of intentions, being asked “what *happened* to your hand” in and of itself can be triggering. It implies there’s something wrong with my hand/how I look/me as a person. Nothing *happened* to my hand, it’s just my hand. I’m just me. And I *happen* to be awesome.
What Am I Thankful for Because of Moebius Syndrome?
The Many Faces of Moebius Syndrome posed this question for Moebius Syndrome Awareness Day 2021. I am thankful for Moebius because it gave me my life purpose. As much as I struggle sometimes with getting stared at because of my hand, if I could magically change my right hand, I wouldn’t. I wouldn’t be me without it. And I wouldn’t be me without Moebius.