Moebius Syndrome

Knowledge is power

So, one of what I think is one of the benefits of being born with a medical condition is that kind of by default I know a lot of stuff that not many other people have cared about or needed to know.  I know a heck of a lot about cranial nerves and what they do (and since most people look at you like you’re from outer space when you mention cranial nerves, that’s a big one!), a bit about genetics, lots about speech and occupational therapy, and miscellaneous things about other conditions and medical issues that I don’t myself face but that I know from my involvement with the Moebius community.  And I like having this information.  I think it makes me more self-aware and a better advocate for my own medical needs.  Some people may think that this extra information we have had to learn kind of by default is a negative consequence of being born with Moebius syndrome, but I think the opposite.

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2 thoughts on “Knowledge is power

  1. I love that you are blogging about this syndrome..my granddaughter, Brenlee was born July of 2009 with this and it is so awesome that you are raising awareness! Please feel free to add me on fb..tina liroff or on Twitter..mom2manykidz5…hugs, tina

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