Columns

In the last year, I’ve gone from battle to battle, surviving one attack after another of neuromyelitis optica spectrum disorder (NMOSD). I didn’t have time to figure out how all of this made me feel. Instead, I focused on work, the closest thing I have to normal, and put…

There’s a lot of things that people don’t see about me. I deal with fatigue, pain, and other unpredictable symptoms that come with having neuromyelitis optica spectrum disorder (NMOSD). Even the simplest tasks can require monumental effort to complete. That’s why “bed rotting,” as it’s called, has become an…

Neuromyelitis optica spectrum disorder (NMOSD) is largely known for its effect on the central nervous system, but the associated skin issues are often overlooked. For those of us living with NMOSD, the skin can become a silent messenger, reflecting the internal battle happening within our body. From goose…

Note: This column describes the author’s early experiences with Ultomiris (ravulizumab-cwvz) and refers to past therapies she’s tried. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I find myself whispering silent prayers throughout the day, pleading for my neuromyelitis…

Selecting healthcare practitioners is a daunting task, especially when you’re diagnosed with a rare disease like neuromyelitis optica spectrum disorder (NMOSD). I visited several physiotherapists, massage therapists, and dietitians before settling on my current team. Through my experiences, I’ve discovered the key questions to ask up front to determine…

When I felt the familiar heaviness in my body, I bravely faced it. “It’s OK,” I told myself. “I’ve been here before and recovered. I can do this.” As I lay in the hospital bed, a prisoner to the many doctors and specialists who checked on me throughout the day…

Last weekend, my older brother and I took a sibling getaway to Tampa, Florida, for his birthday, something we’d never done before. I was excited for the chance to connect with him, but with only three days, we had to be strategic about fitting in all of the activities. Due…

Tonic spasms come on suddenly, last seconds to minutes, and feel like an eternity. They’re a painful and daily reality for many with neuromyelitis optica spectrum disorder (NMOSD). And since my recent transverse myelitis (TM) attack, I’ve been experiencing them multiple times a day. These spasms cause intense…

As a private person, I find it easier to have an invisible disability, despite the emotional toll of appearing “fine” while feeling far from it. For years, I was able to privately manage my symptoms, and I wasn’t constantly asked if I needed help, which allowed me my independence.

Having to deal with my sixth major neuromyelitis optica spectrum disorder (NMOSD) attack is not how I wanted to end 2024 or start the new year. Unfortunately, it’s just my reality. What’s considered an attack? It’s when your symptoms hit a high point. For NMOSD patients, that may…