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How the NMO community showed me the power of rare

Since 2008, the global rare disease community has observed Rare Disease Day every year on the last day of February. Currently, there are more than 7,000 known rare diseases affecting up to 30 million, or 1 in 10, Americans. In 2017, my youngest daughter, Bella, was diagnosed…

Is NMO the cause of my chronic itch?

It’s the middle of the night. My body has decided it is no longer comfortable. I gingerly move my limbs, hoping to find a new position to satisfy my aches and pains. Suddenly, a spot on the top of my head is itchy, so I scratch it. Then another spot…

How Shopping for Bigger Pants Set Me Free

While most of us try not to judge a book by its cover, we inevitably still do it at some point. Society has conditioned us to judge people by their physical appearance first, and then their personality. Additionally, people usually only recognize illness when they can see it. When we…

2023 Brings New Opportunities to the NMO Community

Hello, 2023! A new year brings new opportunities for growth, learning, advocacy, support, and research in the neuromyelitis optica (NMO) community. I am happy to share a few of the exciting things happening in the first few months of the year. Feb. 28 (or Feb. 29 during leap…

Life After an NMO Diagnosis Is Similar to the Stages of Grief

Meeting another patient with neuromyelitis optica (NMO) is a rare occurrence — as rare as this disease. While most of us have incredible support networks, there’s something unparalleled about meeting another person who knows exactly what you’re going through. We don’t have to search for the right words to…