NMO Awareness Month

We all want to belong, but having a rare disease can sometimes feel lonely. Thankfully, the neuromyelitis optica (NMO) community has come a long way since I was diagnosed over 13 years ago. I’ve come a long way, too. Acknowledging that March is NMO Awareness Month is a…

March is NMOSD Awareness Month and patients and advocates are planning several initiatives to put a new focus on the progressive autoimmune disease, known fully as neuromyelitis optica spectrum disorder. Affecting more than 25,000 people worldwide, NMOSD is a disorder characterized by inflammation of the optic nerve — the…

Neuromyelitis optica (NMO) is the illness that robbed my youngest daughter, Bella, of her innocence and a big part of her childhood. It’s the illness that appeared to us overnight in 2017, changing our lives forever. It’s what I was instructed to Google when Bella was diagnosed. NMO…

I sometimes joke that if I had served in the military, I’d win diversity bingo. As a minority woman with a disability, there are many boxes to check off on a self-disclosure form. I am self-absorbed, though, and it’s time I do better. Within the rare disease community, many patients…

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…

Levels of double-stranded DNA — dubbed dsDNA — are elevated in the fluid around the brain and spinal cord of people with severe neuromyelitis optica spectrum disorder (NMOSD), a small study suggests. These levels, which indicate cellular damage, may trigger more inflammation in NMOSD patients, potentially contributing to the…

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 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…