Columns

How the power of visualization helps me manage NMOSD

During my recent family vacation, I made sure to take several mental pictures of the beach, sunrise, and calming blue skies. Over the past 15 years of living with neuromyelitis optica spectrum disorder (NMOSD), I’ve found it important to incorporate complementary therapies such as visualization, which has gotten me…

Living with NMOSD has made me feel like a double agent

Having a rare disease such as neuromyelitis optica spectrum disorder (NMOSD), especially when it’s an invisible disease, is like being a double agent. While some people in my life know about my health challenges, I don’t broadcast them to everyone. In such cases, withholding my NMOSD thus becomes a…

I finally hit my breaking point after 15 years with NMOSD

I first encountered neuromyelitis optica spectrum disorder (NMOSD) 15 years ago. Faced with the unknown after a transverse myelitis attack shut down my ability to walk, I was overwhelmed and scared. That’s when a multiple sclerosis patient gave me the best advice: “Never let them see you…

New insights from my 15 years with NMOSD

September marked 15 years since I was first affected by neuromyelitis optica spectrum disorder (NMOSD). The specific day came and went, but it wasn’t until this past week, while I was sitting on the beach in Cancún, Mexico, that I took a moment to process the past decade and…

Why maintaining good vein health helps me better manage NMOSD

Throughout my journey with neuromyelitis optica spectrum disorder (NMOSD), I’ve often overlooked the importance of maintaining good vein health. Because of that, I’ve paid the price by having far too many difficult days. While we might not think about our veins until there’s an issue, they perform essential functions…

Deciding if changes I experience are new NMOSD symptoms

As I sat at the table across from my family, I forced an appreciative smile. But the smell of the home-cooked meal — lemon herbed potatoes, Greek chicken, and brown rice — was suddenly too much for me to handle. My husband had been working on this perfectly cooked meal…

When your body’s defenses go to war with your hair

Sometimes I stand in the shower, and time just slips by. I numbly run my fingers through my thick hair, and I’m immediately brought back to reality by the chunk of hair in my hand. Hair loss can be a side effect of several medications, including prednisone,…

How I handled my first 2 doses of Uplizna to treat my NMOSD

Note: This column describes the author’s own experiences with Uplizna (inebilizumab-cdon). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I had a rough summer. After enduring three major attacks from my neuromyelitis optica spectrum disorder (NMOSD),…