The Beginner's Guide to Walking — Jennifer V.

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Jennifer V. (she/her) received her diagnosis of neuromyelitis optica spectrum disorder — aquaporin-4 positive — in early 2010. Residing in Toronto, Canada, Jennifer actively manages her condition, which is often unseen, by maintaining a busy schedule. She serves as a professor at George Brown College, works as an HR consultant, and is a passionate patient advocate. Jennifer also plays the roles of a devoted mother to her daughter, a pug’s loving guardian (her fur baby), a dedicated wife, caring sister to three siblings, and a protective daughter. In moments of sleeplessness, Jennifer finds solace in pug photos and videos.

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Confessions of the kind of NMOSD patient doctors warn their interns about

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.

Jennifer van Amerom

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How I’m grappling with symptoms of 3 more autoimmune disorders

My health situation has become incredibly trying recently. I’m hesitant to shed any tears because I fear they won’t stop. When I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), I was told I might face one or more additional autoimmune diseases in my lifetime. Initially, this warning seemed…

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Knowing when to go to the emergency room isn’t always easy

Knowing when to make that crucial trip to the emergency room is a concern that plagues everybody with neuromyelitis optica spectrum disorder (NMOSD). It’s a dilemma that leaves us anxious and unsure. I’m battling a bladder infection, and admitting I have one typically fills me with embarrassment. But each…

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When coping with comorbidities, we need access to care that works

As I do on any typical morning, I peered at my reflection in the mirror, squinting until I managed to insert my contacts. On this particular morning, however, despite my blurred vision, I couldn’t help but notice a peculiar bump on my right ear. “What fresh nightmare is this?” I…

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Is my advocacy for NMOSD self-serving or selfless?

Serving our community should matter to all individuals. I’ve always believed that if each person were to dedicate time to a charitable cause, our society could bring about profound change. Just imagine the kind of world we could create together. Even though I came of age in a household with…

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What the outside world might not understand about life with NMOSD

I love the fall. It’s the perfect balance of weather between the summer’s heat and the winter’s snow. I love wearing layers of clothing, and when the leaves on the trees change their colors it means we’re closer to my favorite holiday, Thanksgiving. I also love the fall because there…

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A frank talk between a disabled parent and her briefly disabled child

Children don’t see race, age, wealth, weight, or disability, we’re told. Instead, they look for unconditional love. I believe that’s true until a certain point; then their innocence is forever lost. My 11-year-old daughter, Sophie, has always been a generous person. Even when she began to grow up and realize…

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How NMOSD magnifies my anxiety about time passing too quickly

Even though summer isn’t officially over yet, it already feels like the end. This year, I’m feeling a bit emotional about it, and I’m sure my neuromyelitis optica spectrum disorder (NMOSD) has something to do with that. Living with NMOSD has made me hyperaware of the effects of…

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How Meta’s response to Canada’s Online News Act hurts patients

You can’t find it if you don’t know what you’re looking for. That’s how I feel every time my Facebook and Instagram communities related to neuromyelitis optica spectrum disorder (NMOSD) discuss a news topic I hadn’t heard about. I’m left madly searching the internet to get caught up. Meta,…

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The secret to success with NMOSD is preparation

I’ve been trying to stay active, but after a long family bike ride, I was exhausted. I opened my fridge looking for a fast and easy snack and audibly cheered when I found the strawberries I’d washed, chopped, and neatly placed into Tupperware earlier that day. Had I not found…

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A long drive triggers an NMOSD flare-up. Now what?

There’s no way to fully prepare for a flare-up of neuromyelitis optica spectrum disorder (NMOSD) when I’m traveling, though I try. I’ve invested in additional travel insurance when out of the country, thankfully never having to use it. I bring records of all my medications should a treating…

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Does Mother Nature already have the cure for NMOSD?

Passing through the Great North here in Canada reminds me of how much I love being connected to nature. I never get enough of it when living in a metropolitan city. Modern medications are saving my life, but I can’t help but wonder if the answer to neuromyelitis optica…

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What is the Canadian healthcare system like for NMOSD patients?

“It’s like heaven and hell at the same time.” That’s my response whenever I meet another neuromyelitis optica spectrum disorder (NMOSD) patient who asks me about our Canadian healthcare system. Don’t get me wrong: I’m an incredibly proud Canadian. There are wonderful aspects to our “Great North,” including our…


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