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Welcome to day 5 of my countdown to Moebius Syndrome Awareness Day! Someone asked what I wish doctors knew about Moebius. Having a facial difference, I sometimes get treated like I’m not there, like I can’t/don’t understand what’s going on. When I was with a parent, doctors
Seemed to talk to them, not me. Either that or they treat me as some kind of specimen that weirds them out because they haven’t heard of Moebius. I wish med students learned about Moebius so they knew what it is, and isn’t. Treat your patients as people first and don’t assume
What they can or can’t understand or their cognitive capabilities. Talk to the patient as a person. See the person first, not the diagnosis. That’s my biggest advice and what I wish more doctors knew. I wish more was known about Moebius in general. Has it impacted me in a way
That I’m not even aware of? I saw an ENT a couple of months ago (who was FABULOUS and had obviously done his research on Moebius) and we found out together that my left vocal cord is paralyzed. I had no idea. What else does Moebius cause that I (and doctors) aren’t aware of?
When I was born, doctors didn’t really know how Moebius would affect me. One doctor said they thought that I would be “handicapped mentally in the future.” I do wish doctors would stop a) making those assumptions and b) making it sound like a tragedy. Words have impact.
Sorry (again) that this thread ended up to be so long. @BrittGratreak did this answer your question? Sorry if it didn’t! Basically I just wish more doctors knew what Moebius was, and that for most people it’s purely a physical difference and that’s it. #MedTwitter
