Moebius Syndrome

Seeking Information

I like information. I work with words, with facts, with books. But sometimes I wonder how much is too much when it comes to knowing about Moebius. Where is the line between being informed and current on the research, and self-pathologizing myself to a point where all I think about is Moebius and how it relates to me? Obviously there is a happy medium somewhere in between. I want to be an informed medical consumer, and part of having a rare medical condition is knowing about it and being prepared to discuss it with medical professionals. I want them to increase the genetic knowledge about Moebius before I have children. I’m actually not that afraid of my children having Moebius since I’m pretty sure I have a more classic type of Moebius that doesn’t seem to be inherited at all, but still… I want to know! Just for the sake of knowing, I guess. Or maybe to be able to tell people “THIS is what caused it”- I mean, it’s complicated enough telling people that you have a condition that they’ve never encountered, much less one that doesn’t yet have a clear “cause.” So basically I want information for information’s sake, which I think is fine (if perhaps a tad obsessive!)

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