Moebius Syndrome Foundation Administration

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Elin

ElinHi everyone, my name is Elin. I’m 32 years old and have no idea how to fit those 32 years into two or three paragraphs, but I’ll give it a shot. I was diagnosed with Moebius Syndrome within the first week or so of my life. From what I can determine, I am somewhere in the middle in terms of the severity of my symptoms: the main effects for me are my inability to make facial expressions, my speech impediment, low muscle tone, as well as a left heel that won’t bend due to the aftermath of several surgeries to correct the club foot I was born with. I was a cute baby, though. I look at my baby and toddler pictures now and I feel love & compassion for that little girl that used to be me. Compassion, not self-pity. That hasn’t always been the case, and I think it’s important.

When I was growing up, sometimes it seemed to me that every time I turned around, something new was wrong with me. It must have felt that way to my family, too, but they were (and are!) wonderful. I just wanted to feel normal. Now that I’m older, I’m not sure anyone really feels “normal,” whatever that means. Junior high was hard. I started listening to music---I loved it loud and dark, which did not help with my hearing loss, but it did help me feel less alone. It’s a funny paradox that a song full of despair can bring hope to someone.

Today I am a graduate student and currently looking for part time work. Job hunting is not my favorite thing. It’s frustrating to look at the Help Wanted ads and wonder if I should even bother to apply for any job that mentions phone work (which is most of them). The point I want to make for any of the younger people coming to the conference who are having trouble is this: things do get better. Yes, they do. Sometimes you have to work at it a little bit harder than what seems fair, but things do change. I like myself today. I think I’m smart; I’m even kind of pretty. Today I have good friends and even the occasional date---another nice perk that I used to think only happened to other people. And: I have nieces! Two nieces, and twin nephews on the way (they may have arrived by the time you read this). This picture is me and my big sister’s daughter, Casey. I knew I would like being an aunt, but I did not know that I would love it. That’s life: You just never know what’s going to happen next.



Events

11th Moebius Syndrome Conference
11th Moebius Syndrome Conference

Plan to attend the 11th Moebius Syndrome Conference, Friday through Sunday, July 18-20, 2014 in North Bethesda, Maryland, just outside of Washington, DC. The 2014 conference will take place at the Bethesda North Marriott Hotel & Conference Center.

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