quality of life

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…

When was the last time you Googled your name? When I do it, I find my column here at Neuromyelitis News. My work as a post-secondary teacher is rewarding, but it’s also important to demonstrate my expertise. That’s why many of my students search for my professional profile…

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…

People who develop neuromyelitis optica spectrum disorder (NMOSD) later in life may go on to experience worse outcomes than those who have early-onset disease, a study in China has found. Worse outcomes included a higher frequency of inflammation of the thoracic spinal cord during relapses, more brain lesions and…

What do you do when you’ve run out of choices? That’s where I found myself in May 2020. After living attack-free for 10 years, I was stunned when I found myself dealing with a surprise neuromyelitis optica (NMO) attack. It wasn’t until the end of that summer that I…

While most of us try not to judge a book by its cover, we inevitably still do it at some point. Society has conditioned us to judge people by their physical appearance first, and then their personality. Additionally, people usually only recognize illness when they can see it. When we…

The new year can represent a new start, except it isn’t, really. I still have neuromyelitis optica (NMO), and the challenges that existed in our lives last year are still here. But what a new year can become is a moment to pause, reflect, and commit to new habits…

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…

In the weeks between Thanksgiving and Christmas, I usually spend some time thinking about my loved ones and what they mean to me. This year, I thought I’d share a love letter to my husband of 12 years, Mike, in hopes that other neuromyelitis optica (NMO) patients might relate.