Note: This column describes the author’s own experiences with various medication side effects. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Living with neuromyelitis optica spectrum disorder (NMOSD) feels like navigating a series of trade-offs. One of the most…

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…

HNSA-5487, Hansa Biopharma’s experimental treatment for neuromyelitis optica spectrum disorder (NMOSD) and other autoimmune diseases, safely and effectively reduced the levels of immunoglobulin G (IgG) antibodies — ones involved in the abnormal immune attacks that drive these conditions — in a Phase 1 clinical trial involving healthy volunteers.

As I write this, it’s the evening before I start receiving Uplizna (inebilizumab-cdon) infusions, a preventive treatment for my neuromyelitis optica spectrum disorder (NMOSD). I’ll admit, I’m feeling anxious. Here’s how Uplizna works: Astrocytes are a type of cell that helps nerves work properly. On the surface of…

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…

SAB Biotherapeutics has developed therapeutic antibodies — without the need for human donors — that can neutralize self-reactive antibodies associated with autoimmune diseases, such as neuromyelitis optica spectrum disorder (NMOSD). Working in collaboration with CSL Behring, a partnership established in 2020, SAB used its DiversitAb…

Summer for most teens is a time to relax, stay up and wake up late, enjoy time with friends, and be free from the demands and stress of high school. For my 15-year-old daughter, Bella, though, summer has been a time to catch up on schoolwork so she’ll pass ninth…

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…

The past few years have been challenging for me, my family, and especially my youngest daughter, Bella, who in 2017 was diagnosed at 9 years old with neuromyelitis optica spectrum disorder (NMOSD). At the time, the best course of therapy recommended by Bella’s neurologist was Rituxan…