NMO Awareness Month

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 whole new life with a rare disease can be confusing and overwhelming. Part of that feeling…

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 me in a major way. My limbs stopped working properly, my vision was all over the…

I will always love the feeling of a good bass line, the way the sound escapes concert speakers and vibrates through my entire body. It’s poetic justice that this feeling can now trigger painful spasms, a symptom of neuromyelitis optica spectrum disorder (NMOSD). My husband (then fiancé) and I had…

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 of the potential side effects, many of which can be quite serious. On the flip side,…

Tests, treatments, and medical procedures are important, but they can be a hassle and are sometimes painful. I don’t always know what to expect, which creates anxiety, especially if a needle is involved. As a neuromyelitis optica (NMO) patient, I have had bloodwork, MRIs, and spinal taps, and I…

Six months ago, a blood test revealed that I had developed a rare side effect — a condition called hypogammaglobulinemia — from a biologic I’ve been on for five years for neuromyelitis optica (NMO) as well as two types of arthritis.

My heart goes out today to the neuromyelitis optica (NMO) patients in Cuba for two reasons. Firstly, it is difficult for them to access treatment right now. Secondly, the island is experiencing tropical weather. Neither factor is helpful for NMO patients. Mileidys wonders if we are in the…

The SPHERES registry, an observational study to better understand the underlying mechanisms and clinical course of neuromyelitis optica spectrum disorder (NMOSD), as well as effects of current treatments, has enrolled its first patient. SPHERES, which stands for Synergy of Prospective Health & Experimental Research for Emerging Solutions in NMOSD,…

My disability, caused by damage from neuromyelitis optica (NMO) attacks, often prevents me from fully participating in social events, outdoor events, and other activities. However, I still choose to participate in some of them, rather than not participating in any. This isn’t to please others, but rather to avoid…

The Illness Challenge Foundation (ICF) sponsored the second annual Asia-Pacific NMOSD Patient Day in Beijing, China, to increase awareness and improve care for those living with neuromyelitis optica spectrum disorder (NMOSD). The May 25 event brought together NMOSD patients, neurologists and other healthcare professionals, and representatives from a variety…