The Many Faces of Moebius Syndrome!

My name is Iren, I'm a 23 year old girl, born with moebius syndrome on my left side of the face. I have often been thinking about how unfair it is to have this rare syndrome. And why some are born with this. When I was a little girl, the world was a very good place. No one judged me for whom I was or what I looked like. I always knew there was something different with me, but didn't really think a lot about it. Until I was 13 I pretended I was normal, and it worked really well! When my teenage years began until I turned 16 daily life was pretty horrible. After years of bullying, people making expressions, and comments at me my self confidence was destroyed. The school I went to was absolutely the worst school a person like me could have to attend. After turning 16 and changing schools, because of higher education, I realized how horrible my life had became. and wanted to make a difference in my own life. A lot of things happened in those years both positive and negative. I think you sometimes have to experience negative things in life. I truly believe it makes you stronger. As you get older you start to have another view of things. You wish things didn't happen but the did happen and they turned me into a stronger person in a rough way.

Being born with moebius on only one side feels so unfair and a little weird. I hope you don't get the wrong impression. Let me explain! When your born with moebius in your whole face, it looks to me like something obviously went wrong. When your born with moebius on only one side of the face it looks like something went wrong but closer to normal. Everyone with moebius and family knows is all about the look, and not about IQ. It's only the look that makes us different from others. My point is that my mind and thoughts are a bit twisted, when it comes to having moebius only on one side. I feel close to normal, but then I notice that I'm not normal. I also realise it when I look in the mirror, or someone sends be weird looks.

If god wants us to be different, so that we can show the world something new. Shouldn't others learn to accept people's differences? Whey couldn't he have made everyone alike? Why does someone have moebius in their whole face, and another only has it on one side? I don't mean to be unfair against people with moebius in their whole face, because I believe they have been wishing that they could have some kind of expression in their face. And here I am having a lot expression on my right side. But again I think that in a amazing way, people with moebius in their whole face, learn to express their feelings and thoughts in other ways. I don't know if this is right or wrong, but I'm thinking it must be easier to accept. Personally and for others.

After getting older, I also learned that life isn't that bad after all. There are so many amazing and wonderful people out there who like me for whom I am, and to know this, my life got better. Sometimes ugly looks really get me down, but then I try to think about what difference I made for that person to day. That person will remember that weird looking girl he/she saw at the bus, and maybe not next time, but the second time he/she sees a person with a different look, he/she will not react in that way they did the first time. And by thinking this thought, my day turned around to a good day.

I could write so much more, but then I could just write a book!

Today I'm a really happy girl, with many friends, and a loving family. I've just graduated as a Product Designer, and I will go on with more studies

If you have anything to ask me or just want to write I will be glad to respond. Please write to: iren.sabo@hotmail.com