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Last month, some of the world’s leading neurologists, researchers, and scientists working in multiple sclerosis and related neurological diseases like neuromyelitis optica spectrum disorder (NMOSD) arrived in Toronto, Canada, for the 10th Joint ACTRIMS-ECTRIMS Meeting. ECTRIMS, the European Committee for Treatment and Research in Multiple Sclerosis, is…

This week, I turned 45. It’s a number that feels both accurate and completely wrong at the same time. In my heart, I’m still the woman who loves electronic dance music and dreams of crossing the finish line at another 10K race. But neuromyelitis optica spectrum disorder (NMOSD) has…

One of my favorite cartoons features Pepé Le Pew, a skunk who becomes infatuated with a cat named Penelope, who accidentally gets a white stripe of paint and is mistaken for a skunk. Pepé blissfully chases after Penelope while she frantically tries to escape. The chaos that follows is pure…

Living with neuromyelitis optica spectrum disorder (NMOSD) often feels like I’ve been dropped into a lifelong board game tournament without warning, training, or even a rule book. I’ll be 45 next week, that age where life itself becomes a complicated mix of caregiving, worrying about aging parents, supporting friends…

When I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), my greatest frustration wasn’t my inability to walk, the numerous tests and MRI scans, or even the number of needles. It was trying to articulate the severity of this disorder to my parents. My parents were both Indonesian, raised…

If I take a minute to pause, I find myself in disbelief when I think about everything I’ve endured with neuromyelitis optica spectrum disorder (NMOSD). It’s as if all those difficult moments are pieced together as flashbacks that make up a terrifying mind movie, one I never auditioned for,…

This post is for the ladies, although I’m going to assume that the men won’t mind eavesdropping. After all, 80% to 90% of neuromyelitis optica spectrum disorder (NMOSD) patients are women. While this is a gender-skewed conversation, trust me, the struggle is universal enough to be educational. There’s…

Living with neuromyelitis optica spectrum disorder (NMOSD) means I’ve become something of a detective. I’m not the glamorous kind with a trench coat and a magnifying glass like Sherlock Holmes, but more like a tired, slightly bewildered Inspector Gadget who wakes up every morning trying to figure out what’s…

As someone living with neuromyelitis optica spectrum disorder (NMOSD), I have learned that life is a delicate balance between caution and courage. There are times when rest is essential and times when I need to push myself beyond my comfort zone. Protecting my health doesn’t mean putting my life…

After a long and exhausting day at work, I drove in silence, first picking up my daughter from camp and then my husband from his office. I knew the inevitable question was coming: “What should we do for dinner?” When it did, I felt overwhelmed. It wasn’t that I didn’t…