The View From Here
— Lelainia Lloyd

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…

One of the most difficult aspects for me of living with neuromyelitis optica (NMO) is dealing with chronic pain. It’s what most affects my quality of life, but in my opinion, it’s also the least addressed and…

In my circle of friends, we often joke that being a rare disease or chronic illness patient is a full-time job. For me, living with not just neuromyelitis optica (NMO), but also several other life-altering diseases that require constant…

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…

In the years since I was diagnosed with NMO, I have had good days, and then bad days when I couldn’t even get out of bed. One summer, I spent 16 weeks in bed, likely due to major…

Just over a year ago, I started a new biologic. As part of my preparation to begin this treatment, I needed to have a power port placed…

As a rare disease patient living with neuromyelitis optica (NMO), I take an enormous number of medications. I have pills for blood pressure, steroid pills to suppress my immune system, and pills to protect my stomach from the…

In the United States, March is Multiple Sclerosis (MS) Awareness Month, but did you know it’s also Neuromyelitis Optica (NMO) Awareness Month? NMO patients are most frequently misdiagnosed with MS, as these two diseases can look quite similar, so…

When I think about Rare Disease Day 2020, it’s with mixed emotions. The day before, I got up at “o’dark-30” to catch an early flight to Toronto. I’d been invited to attend a Rare Disease Day celebration…

Every month for the past 13 years, I’ve had a standing date booked in my calendar. The third Saturday of each month is blocked off for three hours of self-care in the form of a support group meeting. I’m…

I can trace my first neuromyelitis optica (NMO) symptoms to when I was 12 years old. I’d be walking down a flight of stairs, and for a split second it was as if a switch had been thrown, cutting…