A life interrupted, a future reclaimed: Jennifer’s NMOSD story

A life turned upside down

Suddenly, Jennifer’s big dreams felt fragile and unsure. She found herself facing fear, uncertainty, and a loss of control.

“The feeling of being comfortable in my own skin was taken away,” she says. “Before the diagnosis, I had this confidence to just go for it in life. Like, let’s travel. Let’s go for that big job. Let’s go on this road trip. Now, I have to always think, ‘Can my body handle that?’”

This has been Jennifer’s “new normal” for 16 years now and although she’s learned to adapt, living with NMOSD hadn’t gotten any easier until recently. “There are days where I feel like someone else is in control of my body,” she says. “It doesn’t move, feel, or respond the way I want it to. It’s beyond frustrating.”

The diagnosis affected her loved ones, too. Jennifer’s husband took on a major support role overnight, altering the fabric of their relationship. For years, Jennifer struggled with chronic symptoms. Worse, she faced frequent, unpredictable relapses — six or seven between June 2024 and February 2025 alone.

Understanding NMOSD

“NMOSD was initially considered a more severe presentation of MS,” says Dr. Nasser AlOhaly, a neurologist at Toronto’s St. Michael’s Hospital who specializes in central nervous system autoimmune diseases. This changed when the antibody associated with NMOSD, aquaporin-4, was identified. “Aquaporin-4 receptors are found in high concentrations around fluid spaces in the brain and spinal cord, making these areas the main targets in NMOSD attacks,” says Dr. AlOhaly.

Attacks have devastating effects. “People come in blind in both eyes, which happens abruptly when the immune system attacks the optic nerves, or lose varying degrees of motor and sensory function in their limbs when the spinal cord is involved,” says Dr. AlOhaly. “Symptoms develop rapidly over one to two days and can cause permanent injury.”

Wrestling with uncertainty

Because NMOSD is chronic and incurable, relapses can happen. “The immune system can reactivate to mount another attack against the brain and spinal cord,” explains Dr. AlOhaly. “Relapses are unpredictable and tend to be quite dramatic. Even one attack can leave someone unable to walk or with permanent vision loss.” And while lost function can sometimes be regained, Dr. AlOhaly notes that nervous system tissue can’t be repaired once it’s damaged.

“For me, a relapse feels like uneasiness within my body,” says Jennifer. “I’ll notice that climbing the stairs is more difficult, and then later that my legs feel heavy. And then suddenly everything progresses rapidly, and I can’t do the stairs at all.”

Jennifer describes relapses as a series of car accidents — with her body being the car. “Sometimes after a car accident, the car always makes a little rattling noise,” she says. “Every time you have a relapse, you just never know if you’re going to get back to where you were before.”

While Jennifer was able to recover from some setbacks — “My neurologist Dr. AlOhaly and I both fought hard to regain my ability to walk the same way after my recent attacks,” she says — other symptoms became permanent: an unrelenting abnormal sensation in her legs (“Ever since my initial attack, my legs have always felt like they’re in a bit of an echo… I can feel sensation, but it’s muted,” she says), back pain, eye fatigue. Jennifer avoids driving at night, but these persistent symptoms have impacted her life in much broader ways. “NMOSD affects my work, my independence, and my ability to be the mother and wife that I want to be,” she adds.

Every relapse matters — but prevention is possible

Relapse severity is assessed with a full clinical exam and sometimes MRI imaging. “I look at changes in a patient’s vision, strength, sensation, and motor function compared to their baseline,” says Dr. AlOhaly. “If something has changed, we treat it seriously.” NMOSD relapses can escalate quickly, so acting fast is key to preventing permanent damage and disability.

Preventing relapses in the first place is the best strategy, Dr. AlOhaly stresses. He builds strong relationships with his patients — educating them about the disease and getting to know their values and lifestyles — so they can collaboratively develop effective, individualized treatment plans. He also ensures they know to report any new or changing symptoms promptly, stressing that every attack, regardless of severity, matters.

“Dr. AlOhaly has been amazing in advocating for me to get on the right treatment plan, to keep pushing, to keep trying new things. Fortunately, thanks to him, I’ve been relapse free since switching to a newly approved treatment at the beginning of last year,” says Jennifer. “I credit him with saving my life”.

Room for significant improvement

Unfortunately, not every patient’s story is as hopeful as Jennifer’s. Canada’s NMOSD community faces many challenges, from long wait times at the ER, to a lack of multidisciplinary care, to medication access issues. Taking a wider, global lens shows potential areas for improvement.

“Working globally, I see the diversity of health systems,” says Sumaira Ahmed, founder and executive director of the international patient advocacy organization The Sumaira Foundation (TSF). “In some countries, NMOSD care is truly multidisciplinary. Every specialist — rheumatologists, dietitians, endocrinologists — is under one roof, communicating and optimizing a patient’s care. Relapses are very severe and, as the saying goes, time is brain. People must receive urgent treatment quickly to prevent permanent damage, which is why immediate access to care during a relapse is so important.”

Mental health is another important yet often overlooked component of care. “Getting diagnosed is devastating, many medications have side effects that can affect your mood, and chronic illnesses affect all aspects of your life,” says Sumaira, who was diagnosed with NMOSD in her twenties. “Mental health support is so important.”

Sumaira also champions the power of community support, having founded TSF in 2014, just two months after her diagnosis. “I was young and scared,” she says. “I didn’t know what was in store for me, and everything I found online was bleak. I wanted to meet other patients, to hear their stories, to connect.” Today, TSF offers a vital source of community for NMOSD patients around the world. 

So much to be optimistic about

Despite the challenges, there are many reasons for optimism about the future of NMOSD care.

For Jennifer, it’s all about living every moment to its fullest and planning a future that lights her up. “I’m still really focused on my career. I’m not done building it yet,” she says. “And I want to travel more with my family. I’d love to travel to Indonesia to honour my family’s Dutch-Indonesian roots.”

“We’re in a very hopeful time for NMOSD patients,” says Dr. AlOhaly. “Treatments have become far more effective at preventing NMOSD relapses, and readily available, which has dramatically changed what the future looks like for patients.”

Sumaira shares their optimism. “Canada has some top-tier leaders in the field and there’s a lot of great research happening,” she says. “And the advocacy piece is very exciting. TSF has a growing presence in Canada. We recently had over 200 people attend a patient day in Toronto, which was incredibly inspiring.”

At 44, Jennifer still has all the ambition and excitement about life that she did at 27. “In the moments where I do feel great, I just go for it,” she says. “If I want to do something, I’m going to do it.” With her family by her side, she’s focused on protecting the progress she’s fought so hard for — and making the most of every good day.

As we mark NMOSD Awareness Month, Jennifer’s story underscores how critical proactive care can be. Open conversations with your healthcare provider about treatment options — and prompt medical attention if you notice any changes in your symptoms — can play an important role in helping to protect long-term outcomes.