living with nmo

I’ve always loved bright lipstick colors. The bolder, the better, in my opinion. There’s something delightfully defiant that makes me smile about catching my reflection in a window and seeing a pop of fuchsia or fire‑engine red. It’s hard not to feel at least a little cheerful when your lips…

I’m a self-sabotaging, push-the-limits kind of gal. The worst kind of patient. The sort of patient doctors warn their interns about. Yes, I know I should be following their recommendations, nodding politely when I’m told what to do, but my neurologist and I both know that I probably won’t listen.

Treatment with Enspryng (satralizumab) for more than two years was shown to prevent relapses in most people with neuromyelitis optica spectrum disorder (NMOSD) in Japan. That’s according to a new study that tracked outcomes from Japanese NMOSD patients given the approved injection therapy in real-world practice. “Overall, most…

March is NMOSD Awareness Month, and advocates around the world are working to educate others and raise the profile of neuromyelitis optica spectrum disorder (NMOSD), also known as neuromyelitis optica or, simply, NMO. A major international initiative this year is to name March 27 as World NMOSD Awareness Day.

Why does it seem like every Google search I do regarding my health blames my weakened immune system for whatever is happening on a particular day? Take, for example, one simple question I innocently asked: “Why are my feet so dry?” Suddenly, I was knee-deep in results suggesting I was…

I always feel like the start of a new year arrives with a certain amount of pressure. We make resolutions, talk about reinvention, and make quiet promises to ourselves that we’ll do better. As someone living with neuromyelitis optica spectrum disorder (NMOSD), that pressure can feel especially heavy. Chronic…

The kitchen is humming with energy, my daughter has decked out our living room in a sea of blue and white, and the scent of homemade nachos wafts through the air. It’s October in Canada, and the Toronto Blue Jays are making a run for the World Series, the first…

The moment I slip into a pair of high heels, something shifts. Not only do heels lengthen my legs, but they also boost my confidence, improve my posture, and give me a sense of power. It’s not just about fashion, but also what I associate with high heels: the ability…

Before I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), I never gave much thought to routine. I’d sleep when I felt tired, exercise when I had the motivation, and take life as it came. But after NMOSD entered my world, I quickly learned that unpredictability was no longer…

A lot can change if you give it time. Seven months ago, I stood on a beach in Mexico, looking out onto the vast ocean. I remember wanting to feel hopeful after enduring flare-up after flare-up of neuromyelitis optica spectrum disorder (NMOSD), and yet also wondering if it’d just…