Meet Kim

Living with NMOSD

Kim woke up on January 29, 2021 with a tingling, numbness sensation in her left hand and down the left side of her body. She was extremely nervous because she had never experienced anything like this before. Initially, doctors wanted Kim to wait and see if the sensations improved on their own, but her symptoms persisted, and she needed to advocate for herself.

Over the course of approximately nine months, Kim had countless tests, MRIs, nerve studies and even her first and only surgery. Misdiagnoses left her feeling disheartened.

Kim was ultimately referred to a neurologist, who diagnosed her with neuromyelitis optica spectrum disorder (NMOSD) based on a blood test that can confirm the disease. Her diagnosis was met with both relief and fear. β€œIn the beginning it was so overwhelming just learning about what I had or accepting what I had,” says Kim.

NMOSD is a rare and debilitating autoimmune disease that is characterized by unpredictable relapses, also called attacks. Just one relapse can lead to permanent disability, like vision loss or paralysis.1-4

Kim recalls her most devastating relapse – the pain started in the center of her back and became excruciating over several days. Once the pain subsided and she tried to stand, she fell to the floor because half of the bottom of her left foot was completely numb. Today, she continues to work with her medical team to try to manage her symptoms and help prevent future relapses.

Kim has found comfort in connecting with other individuals in the NMOSD community. In sharing her story, she hopes to raise awareness around NMOSD and inspire others with the disease to advocate for themselves.


  1. Jarius, S., Wildemann, B. (2013). The History of Neuromyelitis Optica. J Neuroinflammation, 10, 797.
  2. Mutch K, et al. (2014). Life on Hold: The Experience of Living with Neuromyelitis Optica. Disabil Rehabil., 36(13), 1100-7.
  3. Kessler, R. A., et al. (2016). Treatment of Neuromyelitis Optica Spectrum Disorder: Acute, Preventive, and Symptomatic. Curr Treat Options Neurol.,18(1), 2.
  4. Jiao, Y., et al. (2013). Updated Estimate of AQP4-IgG Serostatus and Disability Outcome in Neuromyelitis Optica. Neurology, 81(14), 1197–1204.