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…
living with nmo
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…
I’m a prolific list-builder, and there should be a support group for people like me. From grocery lists to bucket lists, from daily to-dos to long-term goals, I have a list for nearly everything. Some might see my habit as overkill, but it’s a way of life for me. If…
March 1 kicks off NMOSD Awareness Month, which aims every year to shed light on the experiences of people living with neuromyelitis optica spectrum disorder (NMOSD). The Sumaira Foundation (TSF) has led the month-long advocacy initiative in the U.S. since 2016, promoting efforts to spread knowledge about the…
I love the fall. It’s the perfect balance of weather between the summer’s heat and the winter’s snow. I love wearing layers of clothing, and when the leaves on the trees change their colors it means we’re closer to my favorite holiday, Thanksgiving. I also love the fall because there…
I’ve always loved driving, especially highway driving late at night. Watching every dash on the road zoom by with the hum of the car is both an exercise in concentration and a form of meditation. I was once an occasional smoker (it was short-lived), and I’m embarrassed to admit…
Living with neuromyelitis optica spectrum disorder (NMOSD) and resulting disability can make it hard to find and keep employment, according to a small U.S. study that nonetheless involved patients from more than a dozen states. Group discussions with 20 people with the rare autoimmune disease — of varying races…
There are so many things I still want to do in life. I never stop. Perhaps it’s because I feel that I’m up against a clock. I constantly wonder how long it will be until my neuromyelitis optica (NMO) takes over and I am further limited in energy and…
Recent Posts
- The 3-inch high heels that were an act of rebellion against NMOSD
- 2 NMOSD drugs show equal power at preventing disease relapses
- Confessions of the kind of NMOSD patient doctors warn their interns about
- Real-world data show Enspryng reduces NMOSD relapses over 2.5 years
- How to power through each day, even if you’re living with NMOSD