People with neuromyelitis optica spectrum disorder (NMOSD) have significantly higher levels of the signaling molecule CXCL13 in their blood and cerebrospinal fluid (CSF), the liquid surrounding the brain and spinal cord, a study shows. Also, CXCL13 levels were significantly associated with disability, with higher levels being detected in NMOSD…

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.

People with neuromyelitis optica spectrum disorder (NMOSD) who test positive for NMOSD-driving self-reactive antibodies against the AQP4 protein and Black patients are significantly more likely to have worse disability related to vision. These are the findings of a North American study that analyzed patient data with NMOSD-specific disability scales…

About half of neuromyelitis optica spectrum disorder (NMOSD) patients who test positive for self-reactive antibodies, or autoantibodies, against the AQP4 protein — a hallmark of the autoimmune disease — have at least one other type of autoantibody, according to a new study from South Korea. Many of these other…

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…

A significant proportion of neuromyelitis optica spectrum disorder (NMOSD) patients in the U.S. lost employment, work hours, and wages after their diagnosis, as motor and visual disability and symptoms like pain and fatigue hurt their productivity, a study has found. Older patients, those using mobility aids, and those…

It had to be something special for me to break my silence on X (formerly known as Twitter). I had to share my support for actress Christina Applegate after she appeared at this year’s Emmy Awards in mid-January. Applegate has multiple sclerosis (MS), which has many similarities…

Tocilizumab, an anti-inflammatory medication used off-label for neuromyelitis optica spectrum disorder (NMOSD), can help prevent relapses (flare-ups) and ease disability while being generally safe, according to a meta-analysis. The study, “Tocilizumab treatment in neuromyelitis optica spectrum disorders: Updated meta-analysis of efficacy and safety,” was published in the journal…

Second in a series on visiting Disney World with a disability. Read part one. Big crowds make me nervous. Should someone bump into me, I can easily lose my balance. And the risk of infection weighs heavily on me, given my weakened immune system. A nearby sneeze triggers…

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:…