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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Suddenly, seemingly out of nowhere, I found a sense of empowerment

It was one of those stressful moments when I simply did what needed to be done. My mother had been visiting us in the city for a couple of weeks, and I was sending her home on the train. Parking here in downtown Toronto is nearly impossible, so my husband…

Jennifer van Amerom

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My accessible trip to Disney World with a disability, part 1

First in a series. Christmas, a bustling time for all, becomes particularly challenging for patients like me who have neuromyelitis optica spectrum disorder (NMOSD), as it can take us out of our routine and add unwanted stress. One holiday memory stands out and is yet to be beat:…

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I’m not alone when illnesses lead me to my breaking point

Everyone has a breaking point. It’s natural to feel overwhelmed by sadness, depression, or anxiety when life’s pressures become too heavy. Those of us who have chronic illnesses have our breaking points, too. As a lifelong patient with neuromyelitis optica spectrum disorder (NMOSD), I’d like to believe it…

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Finding the words to thank a caregiver for uplift and service

As November closes, I’m reflecting on how grateful I am to have my family. Dear Family, I know none of you chose this life as a caregiver. Neither did I, but that doesn’t change the guilt I feel about you having to help me manage my health. The day…

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Pets and immunocompromised patients: What you should know

The snoring emanating from my dog, Magnus, is distinctly different from a human’s. His gentle, rhythmic purr, characteristic of pugs, has a mesmerizing yet endearing quality. It’s seamlessly woven itself into the fabric of my daily life, serving as a comforting soundtrack to my existence. When my previous pug,…

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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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