A Blog about Moebius…

Last weekend at the Moebius Syndrome conference, someone raised the question about why there aren’t many Moebius Syndrome-related blogs. Since I seem to be a glutton for punishment, I thought I’d try to start one. Mainly for myself, to express the myriad of thoughts living with Moebius Syndrome raises, but also for anyone else who might come across it.

I’ve been home from the Conference for a day and am beyond exhausted. It’s that strange sort of emotional drain that I can only surmise comes from feeling too much, too strongly – we go through our day to day lives certainly effected by Moebius but not completely consumed by it. Changing that around come Conference-time is always kind of discombobulating, and leads to more questions than concrete answers… Is it a welcome change, to talk about things I experience with people who understand? Is it intrusive? Is it still impossible to express some things I feel? Sitting in on the medical sessions, I start to feel weirdly self-pathologized – when do I need to step back and disassociate from the medical discourse in order to retain some level of objectivity? What does it actually MEAN, anyway, to know this? What good does it do me right here, right now? What does it mean to make myself a research subject, to have my DNA floating around in at least a few different labs?

Some answers to those rather rhetorical questions are easier than others, but I find that parsing out exactly how I feel and how things effect me helps me cope with the influx of emotion that Conferences bring.


  1. I’m a girl from Denmark with Moebius Syndrome, so it’s awsome to know that someone feels the same – and wants to write about it! Thank you so much!!


    1. Natalie says:

      Thank you so much! That means a lot to me.


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