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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…

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…

Most people can agree that life is one big roller coaster of highs, lows, twists, and turns. This is especially true for anyone living with or caring for a loved one with neuromyelitis optica (NMO). When my daughter Bella was diagnosed with NMO in 2017, our world…

What do you do when you’ve run out of choices? That’s where I found myself in May 2020. After living attack-free for 10 years, I was stunned when I found myself dealing with a surprise neuromyelitis optica (NMO) attack. It wasn’t until the end of that summer that I…

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…

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…

The new year can represent a new start, except it isn’t, really. I still have neuromyelitis optica (NMO), and the challenges that existed in our lives last year are still here. But what a new year can become is a moment to pause, reflect, and commit to new habits…

The phoenix is my spirit animal. Out of the ashes it rises, and a new self is born. That’s how I felt after my neuromyelitis optica (NMO) diagnosis, and it’s how I feel every time something changes with this disease. Reinvention is important to my survival, both physically and…

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…

In the weeks between Thanksgiving and Christmas, I usually spend some time thinking about my loved ones and what they mean to me. This year, I thought I’d share a love letter to my husband of 12 years, Mike, in hopes that other neuromyelitis optica (NMO) patients might relate.