NMO Awareness Month

Passing through the Great North here in Canada reminds me of how much I love being connected to nature. I never get enough of it when living in a metropolitan city. Modern medications are saving my life, but I can’t help but wonder if the answer to neuromyelitis optica…

Achieving nine goals could help address inequities with access to properly diagnosing and treating neuromyelitis optica spectrum disorder (NMOSD), a Massachusetts physician maintains. The goals were proposed by Farrah Mateen, MD, PhD, of the Massachusetts General Hospital, Boston as a personal viewpoint in the Multiple Sclerosis Journal under…

An international team of experts has published evidence-based recommendations for how to best treat people with neuromyelitis optica spectrum disorder (NMOSD) who are positive for aquaporin-4 immunoglobulin G (AQP4-IgG), the most common type of disease-driving antibody. The consensus statements were described in the study “International Delphi…

In a racially diverse group of people with neuromyelitis optica spectrum disorder (NMOSD), rituximab worked better to prevent relapses than did oral immunosuppressive therapies, a single-center U.S. study showed. This result was particularly relevant for Black patients — who are usually underrepresented in NMOSD clinical trials but who, the…

I never wanted to be a disability advocate. I don’t know anyone whose childhood dream involved advocacy of any sort, but something happens, or you witness an injustice you can’t turn away from, and a champion is born. I was born an advocate, except I didn’t know it until that…

SPHERES, a real-world registry for neuromyelitis optica spectrum disorder (NMOSD), is now collecting biological samples from consenting participants. Launched by CorEvitas and the Guthy-Jackson Charitable Foundation (GJCF) in 2021, the registry had been collecting long-term clinical data, but not biological samples. “The launch of this biospecimen…

The human body is a fascinating and mysterious thing both to understand and to listen to. Personally, I think hiccups are one of the most annoying things our bodies do. They seem to come at the worst time and last longer than we’d prefer. Growing up, my siblings and…

Familial clustering of neuromyelitis optica spectrum disorders (NMOSD) — having more cases within families than what would be expected — is more common than originally thought. That’s according to a new study whose findings highlight a complex genetic predisposition to the progressive autoimmune disease. Certain DNA variants were shared…

Symptoms related to the autonomic nervous system, which controls automatic bodily function, have a significant impact on the quality of life of people with neuromyelitis optica spectrum disorder (NMOSD), according to a questionnaire-based study. All patients in the study experienced some autonomic system-related symptoms, or autonomic dysfunction, and most…

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…