quality of life

The human body is a fascinating and mysterious thing both to understand and to listen to. Personally, I think hiccups are one of the most annoying things our bodies do. They seem to come at the worst time and last longer than we’d prefer. Growing up, my siblings and…

Living with neuromyelitis optica spectrum disorder (NMOSD) and resulting disability can make it hard to find and keep employment, according to a small U.S. study that nonetheless involved patients from more than a dozen states. Group discussions with 20 people with the rare autoimmune disease — of varying races…

Symptoms related to the autonomic nervous system, which controls automatic bodily function, have a significant impact on the quality of life of people with neuromyelitis optica spectrum disorder (NMOSD), according to a questionnaire-based study. All patients in the study experienced some autonomic system-related symptoms, or autonomic dysfunction, and most…

Dear Past Self, I know you were blindsided by this diagnosis. You’re justified in feeling that it’s unfair, because it is. No one around you has heard of neuromyelitis optica (NMO), even the doctors treating you, but I promise that everything will be OK. This is the first…

My family and I always laugh about my inability to keep plants alive. In my defense, if something isn’t hollering at me for attention or sending me email reminders, I can’t be responsible for watering it. I have never described myself as the nurturing type. However, I am competitive, so…

There’s nothing more frustrating than working hard to reach a milestone, only to be knocked down and have to start all over again. That’s what it’s like having neuromyelitis optica (NMO). My toughest days happen when I’m frustrated with my body. What worked yesterday suddenly might not work today.

For one in three people with neuromyelitis optica spectrum disorder (NMOSD), bad days — marked by high levels of debilitating symptoms — are more common than good days. Patients who are more comfortable talking with their doctors about their symptoms reported fewer bad days and greater treatment…

We all want to belong, but having a rare disease can sometimes feel lonely. Thankfully, the neuromyelitis optica (NMO) community has come a long way since I was diagnosed over 13 years ago. I’ve come a long way, too. Acknowledging that March is NMO Awareness Month is a…

Neuromyelitis optica (NMO) is the illness that robbed my youngest daughter, Bella, of her innocence and a big part of her childhood. It’s the illness that appeared to us overnight in 2017, changing our lives forever. It’s what I was instructed to Google when Bella was diagnosed. NMO…

More than a third of people with neuromyelitis optica spectrum disorder (NMOSD) show cognitive impairment, particularly in visual processing speed and verbal domains, according to a large study in Germany. This cognitive impairment was independent of disease duration and remained constant over two years of follow-up. It also did…