5 Times I'm Reminded I Have a Rare Disorder


1. Being asked, “How do you pronounce that?”

Bonus points if features of your disorder make the name of your disorder unpronounceable! I have Moebius syndrome, a rare neuromuscular disorder causing facial paralysis. It makes bi-labial sounds (M and B!!) hard to pronounce. Can you say irony?

2. I’ve met more people with my condition than most of my doctors.
And that crowd-sourced knowledge from fellow patients can be as valuable as a doctor’s appointment.

3. Be aware. Be very aware.
I sometimes feel I have awareness overload. We have awareness days, weeks and months (yes, different months…) for Moebius syndrome, craniofacial conditions, and associated conditions. Sometimes it takes all I have to keep up with them. (FYI, July is Cleft & Craniofacial Awareness Month!)

4. Sometimes I still feel alone.
Sometimes, all this online connectedness just isn’t enough, and I still feel alone even among the barrage of Facebook posts. And that is OK for me, too.

5. Conferences are a big deal.
When there are only a few thousand of you in the world, meeting people with a rare disorder is a rare occurrence. Enter: family conferences! People are already planning for and saving for the next Moebius Syndrome Foundation Conference next July.

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Thinkstock image by Hemera Technologies

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