The first time I sat in the infusion chair to receive Ultomiris (ravulizumab-cwvz), I felt something I hadn’t experienced for a long time after being diagnosed with neuromyelitis optica spectrum disorder (NMOSD): hope. I needed this therapy to bring stability back to my life, to spend less time in…
treatment
Note: This column describes the author’s own experiences with antidepressants. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. After realizing recently that I should have been more upset about various life situations, I had to reconsider the benefits and…
Some days I feel like I’m made of symptoms. Living with neuromyelitis optica spectrum disorder (NMOSD) means navigating a body that’s constantly shifting beneath me, unpredictable in ways that defy preparation. Speaking of symptoms: One moment, my spine burns with relentless pain. The next day I’m ravenous, only…
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…
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- Reaffirming that access to healthcare is a human right
- Brain, spinal cord shrinkage linked to distinct NMOSD outcomes: Study
- Reflecting on what I’m grateful for softens the edges of NMOSD
- When my invisible illness meets my very visible disabled parking spot
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- Connecting with others who have NMOSD gave me hope