Meet Meg

Living with NMOSD

When Meg was just 15 years old, she began experiencing rapid weight loss, hair loss and severe fatigue. This was frightening for Meg and her family, as Meg was typically a healthy child. Initially, doctors dismissed her experiences as “normal,” but Meg and her parents knew something wasn’t right.

Soon Meg began to display additional neurological symptoms, such as numbness from the waist down. This symptom is more typical of neuromyelitis optica spectrum disorder (NMOSD), which caused Meg’s neurologist to conduct tests that confirmed this diagnosis just before her 16th birthday. NMOSD is a rare autoimmune disease characterized by unpredictable relapses, also called attacks, which can lead to permanent disability.1, 2, 3

Meg’s mom, Cori, reflected, “I was overwhelmed with fear, and as a mom, my mind was racing, how am I going to do this? It was just time to know what we were fighting and start fighting.”

Within the first few years of living with NMOSD, Meg experienced several relapses that led to feelings of weakness and paralysis. Going to school every day was no longer feasible and she completed high school from home.

Since then, by working together with her medical team to manage her disease, Meg has adapted to her “new normal,” and her fear of relapses has eased. After attending college and earning her degree, Meg is pursuing her passions for integrated media and film while taking an active role in advocacy to support the NMOSD community.

“Over time, I've come to realize that everything that I have gone through, there's a reason for it, and there's a way to educate and make things better for the next person that gets diagnosed,” says Meg.


  1. Jarius, S., Wildemann, B. (2013). The History of Neuromyelitis Optica. J Neuroinflammation, 10, 797.
  2. Kessler, R. A., et al. (2016). Treatment of Neuromyelitis Optica Spectrum Disorder: Acute, Preventive, and Symptomatic. Curr Treat Options Neurol.,18(1), 2.
  3. Jiao, Y., et al. (2013). Updated Estimate of AQP4-IgG Serostatus and Disability Outcome in Neuromyelitis Optica. Neurology, 81(14), 1197–1204.