Jennifer van Amerom,  —

Dear Past Self, I know you were blindsided by this diagnosis. You’re justified in feeling that it’s unfair, because it is. No one around you has heard of neuromyelitis optica (NMO), even the doctors treating you, but I promise that everything will be OK. This is the first…

My family and I always laugh about my inability to keep plants alive. In my defense, if something isn’t hollering at me for attention or sending me email reminders, I can’t be responsible for watering it. I have never described myself as the nurturing type. However, I am competitive, so…

There’s nothing more frustrating than working hard to reach a milestone, only to be knocked down and have to start all over again. That’s what it’s like having neuromyelitis optica (NMO). My toughest days happen when I’m frustrated with my body. What worked yesterday suddenly might not work today.

I could feel the discomfort in my throat start to build. Despite how often I cleared my throat, I couldn’t make the feeling disappear. Next, I tried a large glass of water, but the sting with every swallow confirmed my worry: I’m sick. As a neuromyelitis optica (NMO) patient…

We all want to belong, but having a rare disease can sometimes feel lonely. Thankfully, the neuromyelitis optica (NMO) community has come a long way since I was diagnosed over 13 years ago. I’ve come a long way, too. Acknowledging that March is NMO Awareness Month is a…

I sometimes joke that if I had served in the military, I’d win diversity bingo. As a minority woman with a disability, there are many boxes to check off on a self-disclosure form. I am self-absorbed, though, and it’s time I do better. Within the rare disease community, many patients…

When was the last time you Googled your name? When I do it, I find my column here at Neuromyelitis News. My work as a post-secondary teacher is rewarding, but it’s also important to demonstrate my expertise. That’s why many of my students search for my professional profile…

It’s the middle of the night. My body has decided it is no longer comfortable. I gingerly move my limbs, hoping to find a new position to satisfy my aches and pains. Suddenly, a spot on the top of my head is itchy, so I scratch it. Then another spot…

What do you do when you’ve run out of choices? That’s where I found myself in May 2020. After living attack-free for 10 years, I was stunned when I found myself dealing with a surprise neuromyelitis optica (NMO) attack. It wasn’t until the end of that summer that I…

While most of us try not to judge a book by its cover, we inevitably still do it at some point. Society has conditioned us to judge people by their physical appearance first, and then their personality. Additionally, people usually only recognize illness when they can see it. When we…