“Ladies and gentlemen, please welcome to the MRI, all the way from the changing room, the one and only …” I’ve sauntered into the room and grabbed the finger heart rate monitor, only to turn it into a makeshift microphone. The nurse looks at me, clearly unamused. I know…
For the first 10 years after I was diagnosed with neuromyelitis optica (NMO), I chose to keep my condition private because I worried about how others might perceive me. But over the past two years of the pandemic, I’ve made the conscious decision to own my truth. I’ve been…
Feeling misunderstood is one of the biggest challenges I face with neuromyelitis optica (NMO). This week, we took our daughter sledding with a couple of friends. Sledding is a Canadian rite of passage, though I’ll admit it feels dangerous most of the time. Our brave 9-year-old, prepared with a helmet,…
Sometimes in life, the easiest decisions make the greatest impact. It probably wasn’t reasonable for a new couple to get a dog together, but that’s exactly how Marmaduke came into our lives. A wild idea led to an internet search, and as luck would have it, we were able to…
In the first five years after my neuromyelitis optica (NMO) diagnosis, my health took a sharp nosedive, which shook up everything I thought I knew about my future. Suddenly, my body was betraying me in a major way. My limbs stopped working properly, my vision was all over the…
When I was being diagnosed, my initial MRI revealed that I had long lesions over several sections of my spinal cord. While I knew nothing about the disease I was about to be diagnosed with, I understood that any damage to my spinal cord was bad news. It meant I…
When I think back over the years I’ve lived with my rare disease, neuromyelitis optica (NMO), and several comorbidities, including the times I received my life-changing diagnoses, one thing in particular stands out: Not once…
At an educational seminar next month, experts will discuss advances in the diagnosis and care of neuromyelitis optica spectrum disorder (NMOSD), as well as the ongoing COVID-19 pandemic and how it is affecting the NMOSD community. Sponsored by the…
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