Neuromyelitis optica spectrum disorder (NMOSD) is largely known for its effect on the central nervous system, but the associated skin issues are often overlooked. For those of us living with NMOSD, the skin can become a silent messenger, reflecting the internal battle happening within our body. From goose…
quality of life
When I felt the familiar heaviness in my body, I bravely faced it. “It’s OK,” I told myself. “I’ve been here before and recovered. I can do this.” As I lay in the hospital bed, a prisoner to the many doctors and specialists who checked on me throughout the day…
Cedars-Sinai was designated a Center of Excellence in Rare Neuroimmune Disorders due to its efforts at advancing care and research for rare immune-mediated diseases of the central nervous system (brain, spinal cord and optic nerve), such as neuromyelitis optica spectrum disorder (NMOSD). The designation was awarded by the patient advocacy…
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.
Having to deal with my sixth major neuromyelitis optica spectrum disorder (NMOSD) attack is not how I wanted to end 2024 or start the new year. Unfortunately, it’s just my reality. What’s considered an attack? It’s when your symptoms hit a high point. For NMOSD patients, that may…
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…
Wouldn’t it be nice to glide into the holiday season with everything checked off your to-do list? Every year, I set out with the best intentions to start my Christmas shopping early, write heartfelt holiday cards, and take care of mundane details like ordering a turkey from my local butcher…
I thought I had put on a brave face and spoken in a calm tone. I’d told my daughter that I’d been to the emergency department at the hospital many times before, so it wasn’t a big deal. I’d be home before her bedtime. Three hours in, she started to…
Children with neuromyelitis optica spectrum disorder (NMOSD) who live in disadvantaged socioeconomic neighborhoods are more likely to have more severe disease-related disabilities, a study in the U.S. indicates. Two years after a diagnosis, Black pediatric patients had significantly more severe disability, as assessed with the standard Expanded Disability Status…
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…
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