quality of life

I first encountered neuromyelitis optica spectrum disorder (NMOSD) 15 years ago. Faced with the unknown after a transverse myelitis attack shut down my ability to walk, I was overwhelmed and scared. That’s when a multiple sclerosis patient gave me the best advice: “Never let them see you…

September marked 15 years since I was first affected by neuromyelitis optica spectrum disorder (NMOSD). The specific day came and went, but it wasn’t until this past week, while I was sitting on the beach in Cancún, Mexico, that I took a moment to process the past decade and…

Throughout my journey with neuromyelitis optica spectrum disorder (NMOSD), I’ve often overlooked the importance of maintaining good vein health. Because of that, I’ve paid the price by having far too many difficult days. While we might not think about our veins until there’s an issue, they perform essential functions…

As I sat at the table across from my family, I forced an appreciative smile. But the smell of the home-cooked meal — lemon herbed potatoes, Greek chicken, and brown rice — was suddenly too much for me to handle. My husband had been working on this perfectly cooked meal…

Sometimes I stand in the shower, and time just slips by. I numbly run my fingers through my thick hair, and I’m immediately brought back to reality by the chunk of hair in my hand. Hair loss can be a side effect of several medications, including prednisone,…

Note: This column describes the author’s own experiences with Uplizna (inebilizumab-cdon). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I had a rough summer. After enduring three major attacks from my neuromyelitis optica spectrum disorder (NMOSD),…

There are 168 hours in a week. That’s quite a bit of time to accomplish life. But what if many of those hours are robbed from you? Let’s examine my schedule, for instance. I’ve worked since I was 14 years old. My first job was at McDonald’s, where I loved…

The risk of losing income increases dramatically within a few years after the onset of neuromyelitis optica spectrum disorder (NMOSD) in patients positive for antibodies against aquaporin-4 (AQP4), compared with the general population. That’s according to a nationwide study in Denmark that also showed AQP4-related NMOSD was strongly associated…

As summer winds down, I’m eagerly awaiting the return of fall. I love fall fashion, and I can’t wait for a break from the intense sunlight. After more than a decade of remission, my rare disorder, neuromyelitis optica spectrum disorder (NMOSD), reared its ugly head this summer, causing absolute…

It’s not you; it’s me. That’s a way to explain the inevitable mood swings that come with neuromyelitis optica spectrum disorder (NMOSD), but it’s not the whole story. There’s a lot to unpack with an invisible disability. We who have a rare disorder may have trouble articulating how it’s…