Volcán de Fuego, a volcano in Guatemala, has been struck by lightning while it erupts. Just think about that for a second — a volcano already spewing lava and ash getting electrified by the sky. It’s one of Mother Nature’s most breathtaking and fearsome displays of power. Some brave souls…
Daily living
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…
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…
Selecting healthcare practitioners is a daunting task, especially when you’re diagnosed with a rare disease like neuromyelitis optica spectrum disorder (NMOSD). I visited several physiotherapists, massage therapists, and dietitians before settling on my current team. Through my experiences, I’ve discovered the key questions to ask up front to determine…
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…
Last weekend, my older brother and I took a sibling getaway to Tampa, Florida, for his birthday, something we’d never done before. I was excited for the chance to connect with him, but with only three days, we had to be strategic about fitting in all of the activities. Due…
Tonic spasms come on suddenly, last seconds to minutes, and feel like an eternity. They’re a painful and daily reality for many with neuromyelitis optica spectrum disorder (NMOSD). And since my recent transverse myelitis (TM) attack, I’ve been experiencing them multiple times a day. These spasms cause intense…
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…
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…
Recent Posts
- Living with NMOSD means learning how to combat decision fatigue
- Immunosuppressive treatment may lower DN-NMOSD relapse risk
- NMOSD has a way of opening our eyes to the little luxuries in life
- Adult brain can replace key cells lost in NMOSD, study finds
- Trial finds NMOSD treatment prevents disease relapses for years