Lelainia lives on the beautiful west coast of Canada, in Port Moody, British Columbia. Lelainia was diagnosed with neuromyelitis optica spectrum disorder in 2012 after initially being misdiagnosed with multiple sclerosis in 2007. She has lived with NMO since she was 12. Lelainia believes that as patients, our stories are powerful. Her hope is that by sharing her experiences living with NMO, she will help educate, uplift, and inspire the rare disease community.
I noticed recently that my left eye was irritated. It felt sunburned, which seemed odd given that it’s late autumn on the west coast of Canada, which means it’s chilly and wet.
When we are diagnosed with neuromyelitis optica (NMO), it can feel like we’re being pushed into the deep end of the pool and left to sink or swim on our own. Navigating a…
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…
Like many Canadians, I grew up watching curling, a beloved national sport that helped make the long prairie winters more tolerable. I’d watch with my grandparents and cheer for the teams that made…
As someone with neuromyelitis optica (NMO), I am no stranger to steroids. Like most NMO patients, I have a love-hate relationship with them. I jokingly refer to them as “the devil’s Tic Tacs” because…
When I was misdiagnosed with multiple sclerosis (MS), and five years later, properly diagnosed with neuromyelitis optica (NMO), I was told that a hallmark symptom of each disease was optic neuritis. This…
As a rare disease patient with neuromyelitis optica and comorbidities, my medical care is complicated. I have an extensive healthcare team that includes: a family doctor a neurologist and neuro nurses a rheumatologist three…
Fourteen years ago, when I was in the process of being diagnosed, I suffered a major neuromyelitis optica (NMO) attack on my spinal cord. The resulting transverse myelitis robbed me of the…
Summer has always been a struggle for me. While most people celebrate the warmer months and are off enjoying the great outdoors, I dread this time of year because I am very heat-sensitive.
In early April, I became a grandmother (Gigi) for the first time. Reaching this important milestone gave me pause. In the months leading up to the baby’s birth, I thought a lot about what…
My quest to become a wheelchair owner and user began with pitching the idea to members of my care team. As I shared in my last column, that didn’t go as smoothly…