The greatest challenge I’ve had to overcome as someone with neuromyelitis optica (NMO) — something I’ve heard echoed by other patients — is the need for better support. This begins with the expectations we each have of those in our lives. When those expectations aren’t met, we…
Columns
Being diagnosed with a rare illness such as neuromyelitis optica (NMO) can be devastating, affecting everything from day-to-day life to relationships, work, and finances. When my youngest daughter, Bella, was diagnosed with NMO in 2017 at the age of 9, she spent six weeks in the hospital, and…
While here in Canada we celebrate Thanksgiving a little earlier than our friends in the United States, I feel it works to my advantage. I treat the Thanksgiving holiday — which falls on the second Monday in October in Canada — as the start of a period of…
I am scared of dying. This is a truth I have avoided saying out loud or acknowledging for the last 13 years. When I was diagnosed with neuromyelitis optica (NMO), I Googled the disorder, and the internet only gave me five years to live. My loved ones found…
Advocacy is the action of advocating, pleading for, or supporting a cause or proposal. I’m a firm believer that we’ve all been an advocate or benefited from advocacy at least once in our lives. Personally, I’ve been able to experience the blessing of both having an advocate and working to…
My family has recently become obsessed with the “Overcooked!” video game. With up to four players, we work against the clock chopping vegetables, frying fish or meat, and assembling plates, all while going up against obstacles like the frozen tundra or mice that steal your supplies. It’s incredibly…
It feels like there’s a test for everything. As I hit milestones with neuromyelitis optica (NMO), a rare autoimmune disease that can affect the spinal cord and optic nerves, I am subjected to more tests. The latest was a bone density test, also called a dual-energy X-ray absorptiometry (DEXA)…
In the weeks after my youngest daughter, Bella, was diagnosed with neuromyelitis optica (NMO) in 2017, work and finances weighed heavily on my mind. I’d started a new job a month before Bella got sick, so I didn’t have any paid time off and didn’t qualify for the Family…
Over the weekend, I took my daughter to her first in-person birthday party in almost three years. Fate can be cruel sometimes, which is how I found myself at an indoor jungle gym. I forgot how loud children’s screams and high-pitched voices can be, especially when amplified by the warehouse-turned-gym…
If you’ve been around the medical community long enough, you’ve likely heard the term “gut health.” But what exactly does that mean, and how does one create an optimal internal balance? Good gut health, generally speaking, is having the right balance of good bacteria and other microbes in the…
Recent Posts
- Embracing an opportunity for advocacy on Rare Disease Day
- Cognitive issues affect nearly 1 in 3 with NMOSD, study finds
- With AI’s expanded use in healthcare settings, I’m excited for the future
- Pure oxygen therapy may reduce inflammation in NMOSD: Study
- How NMOSD has quietly shaped my experience of pain