ANITA' STORY When thinking about what to write about myself I found it very difficult to know where to start. Even at the young age of 20 it feels that my life has been such a long journey of ups and downs. This is not meant to be pessimistic story just a real analysis of how moebius effected and continues to effect my life. I am one of the lucky one's that suffers mildly from Moebius. Essentially the main thing that connects me to moebius is my lack of movement in my upper lip. However I do have so many other little things that if aren't connected seem to effect my life more than this does. I have no lateral movement in my eyes, severe dermatitis, small ear canals and very weak hand muscles amongst other things. I suffered from very bad bullying for most of my schooling not only was the fact I didn't smile a source of entertainment for other children but also the fact that my teeth are so far protruded. As I was trained to use my tongue for anything that my lips would do I use it for everything. Although I have had a great deal of orthodontic work, my teeth always seemed to go back to the same place. It didn't help that I was constantly missing school due to the numerous ear operations that I had to have. The half shaved heads didn't help either. Even in high school I was bullied, a group of people called me crusty due to the severe dermatitis behind my ears. Additionally weak hand muscles are still a major problem as no matter how much occupational therapy I have had they are still as weak as a child's so my handwriting is a basic as a child's. Although most people would not realize that this is an issue, at University (college) in one of my areas of study Japanese I am constantly losing marks for my messy writing. As a result of my schooling I am still not a fan of meeting new people and still don't have large friendship groups. Although I can say in past 5 years I have developed many close friendships which are very genuine and I would not try to change my personality one bit. Moebius has has strengthened and developed me in ways that I don't think anything else could of. I am a very determined person and know that I have a long way to go. I am fiercely independent and know that I can not rely on anyone else to get me where I want to go and like every other university student I want to go far. Although I used to feel that I had trouble obtaining part time work due to my appearance. I now have a good job and pride myself on the fact that I am supporting myself through university. I dream of changing so much and although I am studying business have great plans to encourage more research to be done on Moebius. Here in Australia I have never met another sufferer and this is another thing that I really want to do. It was not until recently that I discovered this site and saw information on techniques such as body brushing that I plan to look into to see if I can be helped in anyway. This is not to say that moebius is not manageable without this but I believe that I am strong enough now as a person to motivate myself to do the treatment without too many expectations. To any new parent of a child with moebius, I say that support is definitely the key to maintaining your child's happiness. I believe that one of the difficult things about this syndrome is that it is very manageable and with speech therapy and occupational therapy you can live like anyone else. Because of this you are not really different and therefore more susceptible to ridicule. I thank the director of this web site for creating awareness for this rare birth defect and creating a much needed support network. I would love to talk to anyone about moebius so please don't hesitate to email me
Anita |