What is Moebius Syndrome? A refresher.

I know that I must have done a post like this before but by now it’s buried by my myriad of blog posts. I also have a page about what Moebius is (at the top of the page) but I know that not everyone goes to the different pages.

Sooo here is a refresher course of what Moebius in my ongoing quest to raise awareness about it. Moebius Syndrome is the malformation or underdevelopment of the cranial nerves. These nerves control a lot of things including facial movement hence why people with Moebius have facial paralysis. There’s a lot of different things that can go along with having Moebius such as speech impairments, hearing impairments, deformed limbs, vision problems, dental issues,  eating troubles sometimes due in part to a paralyzed tongue (which I have) and some kids with Moebius are also on the autism spectrum. Now these are only [b]some[/b] of the physical effects of Moebius Syndrome. There are also mental/psychological effects too. Social anxiety due to looking/sounding different, depression (Obviously people without Moebius suffer from depression as well but it can be prevalent solely due to having Moebius), feeling inadequate or feeling like your life will not amount to much if anything (I know this firsthand because I felt it all through high school). There are a lot of things that go along with having Moebius. I haven’t covered all things that affect people with Moebius I know but these are the most prominent and common. For me, Moebius affects my speech and like everyone else with it, I have facial paralysis which means I have no expression and actually can not move my face at all. I had what is called “Smile Surgery” in order to be able to form some semblance of a smile. It’s not the same as a “normal” smile but it’ll do I guess. I will never forget picture day in elementary school. I used to dread being asked to “show some teeth!” because I couldn’t. I could barely just smile. Another thing about Moebius, we don’t really blink. A lot of people have to use eye drops to keep their eyes lubricated because of this but my eyes seem to be fine without it. I’ve had so many surgeries on my eyes and the muscles. I had to have laser eye surgery three times because the correction needed was so great. Our muscles are not the same as “average’ people so I have had to have eye muscle surgery to help my eyes work better together. They were completely frozen in place when I was younger. They couldn’t move side to side or vertically. The surgeries seem to have helped but my left eye still drifts out despite having yet another surgery to fix that. A co-worker asked me the other day what eye I see out of better and where she should stand so that I could see her. Okay, I can see you wherever you stand. It’s just it looks like I’m looking two different places. I hate it. I’ve made an appointment with my Ophthalmologist to see what further we can do about it. I’ve already had surgery twice to try and correct it so I am not sure what more he is going to be able to do. Hopefully something. Probably the biggest thing that is affected for me and what is most noticeable is my speech. It’s not as clear as I wish it was. I’ve let it hold me back from a lot of things as I know I have outlined in my previous blogs. It’s hard to let it not hold me back, however much I wish it didn’t. I feel like I am getting better in dealing with it but it’s very difficult sometimes. The thing is, some of my Moebius friends are teachers, working for their cities or towns, talking on the phone in their jobs, working with the public and they are doing just fine. I think that our prior circumstances affect our future a lot of times so I know that I must have had some pretty big issues with my speech in the past and those issues are catching up to me and making me even more conscious about it. I know I told the story of someone calling for my mom on the phone when I was like 10. She was out somewhere and I tried to explain this and the lady abruptly said “I can’t understand you”. That is only one example of the multitude of things that have gone on in my life. 

I’m tired of feeling held back. I want to empower not only myself but others with Moebius. I don’t want kids with Moebius to grow up to feel the way that I felt. I don’t want them to feel like they won’t amount to anything because let me tell you it is not a nice feeling. I started this blog in an effort to help raise awareness of this rare syndrome but I feel like I need to do better so that I can raise awareness on a global scale. I am actually looking to become involved with an organization that I love so much that shows the beauty of being different and it at the same time raises awareness of different conditions. More information about that when it all gets sorted out. I’m emailing back and forth with someone about it so I hope that it comes to fruition! We all have a chance to make the world a better place for everyone and I completely feel like my calling is to raise awareness of disabilities. I’m not going to let my experiences in life be for nothing if I can use them to help future generations and our generation that are living with Moebius. 

If you haven’t already please sign the guestbook!! I so want feedback on my blog and what people think of it, if I am getting awareness out there or not. If you have any suggestions, questions or advice please let me know! 

Thanks for reading yet another blog from me and letting me into your lives in my quest to raise awareness of Moebius Syndrome! 

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One thought on “What is Moebius Syndrome? A refresher.

  1. I saw @nenshi’s RT and thought I’d take a peek at your blog. Very interesting! I had never heard of Moebius Syndrome before. It sounds like you’re really empowering yourself and are on your way to great things.

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