Connecting with others who have NMOSD gave me hope

They say that time heals all wounds, but when you’re living with a rare autoimmune disorder that has no cure, every relapse leaves lasting damage, both emotional and physical.

Last week, I attended a patient day for the neuroinflammatory community here in southwestern Ontario, Canada, where I had the opportunity to connect with other patients who have neuromyelitis optica spectrum disorder (NMOSD). What struck me most about the educational event was how many people in the room were what I’d call “NMOSD babies.” Most of them were less than five years into their journeys, having been recently diagnosed. In comparison, I’ve lived with this disease for 16 years.

As I listened to others describe their first NMOSD attacks and subsequent diagnoses, I realized that time hasn’t healed any of my wounds. Whatever the NMOSD nightmare, I’ve probably lived through it. When it comes to treatment plans, I’ve probably tried them at some point, relapsed, and started over with another one.

Recommended Reading

November 7, 2025 News by Andrea Lobo

B-cell blocker used for MS reduces NMOSD relapses: Study

A story of endurance

In many ways, hearing about other people’s experiences with NMOSD caused me some anxiety. One speaker on the patient panel pondered their own mortality, which broke my heart. I’ve been in that mindset before. Another speaker highlighted how challenging it is to be prescribed prednisone every time a relapse occurs. (They called it the “devil’s Tic Tac,” which generated laughs from the audience, as NMOSD patients are intimately familiar with the steroid rage, “moon face,” and weight gain that prednisone causes.)

The speakers also lamented the experience of not being able to recognize themselves in the mirror, and they acknowledged how valuable it is to meet other patients who seem to “get it.”

I tend to shy away from conversations like this, though, because they stir up fear and memories I’ve tried to bury. Yet despite how broken and jaded I felt, I was also hopeful. These new patients are entering a world that bears little resemblance to the one I faced in 2008. Back then, treatment options were limited, diagnoses were often delayed, and many doctors hadn’t even heard of NMOSD. Today, more research, advocacy, and most importantly, hope, exist. I found myself offering others reassurances instead of warnings, noting that stability is possible.

NMOSD, once thought to be a subset of multiple sclerosis (MS), now has its own diagnostic criteria. Neurologists recognize the similarities between NMOSD and MS, such as symptomatic cerebral lesions (the white spots found on the brain with an MRI), but there are now clear biomarkers that distinguish each disorder.

These differences may seem subtle, but they represent years of dedicated research by the medical community. That’s a huge win, because it shows there’s growing interest in understanding the unique mechanisms of NMOSD. With that comes hope for more targeted and effective treatments, such as those approved since 2019. (Shout out to Ultomiris (ravulizumab-cwvz), which has been keeping me alive for the past year.)

During the discussion, patients were asked what they hope for in our collective future. Some responses were expected, while others were surprisingly profound. Of course, we all want better pain and fatigue management, more affordable medications, and treatments without side effects. But what many of us long for most is a broader understanding and recognition of NMOSD, like the familiarity that people have with MS. That level of visibility would make adverse experiences, such as trips to the emergency room, much easier for patients to manage.

At the end of the day, I was glad I attended. There’s something powerful about being able to say, “I’ve been there, and I’m still here.” It’s an important reminder to myself that the scars, the uncertainty, and the invisible struggles don’t disappear; rather, they become part of a story of endurance that I can now share with others to help them navigate their own journeys.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.