Before I met Natalie in September 2016, I’d never heard of Moebius Syndrome, a rare neurological condition. I first met Natalie and her service dog, Cassius, at the MedicineX conference (where Cassius and my friend Steve’s guide dog, Murray, were mere hours later forced to ignore one another all night while they sat very close at dinner!).
January is Moebius Syndrome Awareness Month. So that we can all learn more, I thought it was a great time to interview Natalie about life with Moebius syndrome! Thanks for joining us, Natalie!
Hi Natalie! Tell us a bit about yourself.
For work, I’m a librarian (specifically, teen services librarian at a large suburban public library), and also do freelance social media and graphic design for non-profits. I love the arts (huge theatre fan, love museums, music, and being crafty), travel, and volunteering for a few different nonprofits. I have a dog and ride horses for fun.
Tell us more about Moebius syndrome. What is it?
Moebius syndrome is a rare craniofacial neuromuscular disorder that causes issues with cranial nerves 6 & 7, plus some other assorted ones, limb abnormalities and assorted other things for different people (virtually all people are addicted differently). For me it means that I have partial facial paresis (feeling is fine, but movement is limited): I was born with strabismus, can’t fully smile, can’t frown at all, blink, close my eyes or move my eyes side to side or my eyebrows at all. For me it also affects me neurologically – I have issues with balance, coordination, fatigue and depth perception. I have a repaired club foot that also causes issues. It also randomly causes issues with sleep. Think that’s all but have probably forgotten something, such is the nature of trying to recite one’s looong medical history!
What’s your story? How do you feel that Moebius syndrome impacts you?
I always find this question hard, since I have no idea what the other option would have been! I’ve done a lot of unique cool stuff (like MedX, a week at the NIH, etc) because I have Moebius, but lots of the other things I’ve done in life like academics and my work don’t have anything to do with it… it’s complicated!
What’s your biggest takeaway from living with Moebius Syndrome? What do you wish people knew?
Hmm… In general, not judging people who might look different or have a speech impairment. [There is] nothing worse than being talked down to! But also that rare disease patients are experts – I’ve probably met more people with Moebius than many doctors.
Has connecting online been a part of your patient journey so far? Why or why not–and if so, what has that looked like?
I kind of came of age as the internet came of age, started out in high school on some random MGH Braintalk forums, then as FB [Facebook] and blogs and Twitter and other things came up I did that as well… it’s definitely the way the Moebius community stays in touch. When you are rare enough that you might only meet people once a year or so, it’s useful. But at the same time it’s sometimes information overload and I sometimes struggle with sharing with people I don’t “know”… so I’m still figuring out my online presence.
Do you wear a medical ID bracelet, or have you in the past? Why or why not?
Yeah, I had a MedicAlert bracelet forever – I have asthma (or lung muscle tone issues, my pulmonologist never decided) and heard you were supposed to, plus if I were to like faint or something it would be nice not have them freaking out about the paralysis. But I took it off last winter for my MRIs and never really put it back on.
Well, I’m happy to hear from our discussion later that you know the importance and are hoping to put a new one back on!
Tell us about Cassius :].
Cassius is a service dog from Canine Companions for Independence, he helps me with mobility tasks I find difficult due to my neuro[logical] and pain issues. He loves carrying things for me, picking things up that I drop, and helping me with things like taking my socks off.
Final thoughts, or anything you’d like to add?
This is awareness season and I always struggle with trying to push beyond awareness to action. I honestly don’t care too much if people know the names of all 7,000+ rare diseases that are out there, but action supporting people who live with them is crucial… every year I try to figure out how to articulate this and never am really satisfied.
Thanks so much for joining us, Natalie!
If you’re on Twitter, follow Natalie at @_nataliea. You can learn more about Moebius Syndrome by visiting the Moebius Syndrome Foundation, and visit Canine Companions for Independence to learn more about service dogs trained through CCI. While I’m sure he’d enjoy a treat in the mail, you can follow Cassius on Twitter, too, and give him some virtual pats!