symptoms

Having a rare disease such as neuromyelitis optica spectrum disorder (NMOSD), especially when it’s an invisible disease, is like being a double agent. While some people in my life know about my health challenges, I don’t broadcast them to everyone. In such cases, withholding my NMOSD thus becomes a…

The composition of bacteria in the gut is altered in neuromyelitis optica spectrum disorder (NMOSD) patients experiencing disease relapses compared with healthy people in the same household, a study reports. Following treatment, however, the gut bacterial profiles of NMOSD patients in remission resembled those of healthy people. “The…

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…

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,…

In the five years before their first disease attack, people with neuromyelitis optica spectrum disorder (NMOSD) required significantly more doctor’s office visits and hospitalizations than their peers in the general population, a new study from Canada found. The researchers believe these findings point to the presence of an NMOSD…

Note: This column describes the author’s own perspectives on several potential treatments for pain. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I’ve said it before, and I’ll say it a thousand times more: Living with pain is the worst.

Experiencing attacks marked by transverse myelitis, or spinal cord inflammation, significantly increases the chance of worse disability in people with neuromyelitis optica spectrum disorder (NMOSD) patients and the related condition myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD). Those are the findings of a study analyzing data from a Portuguese national…

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…