Unstoppable
Starts With You
Neuromyelitis optica spectrum disorder (NMOSD) can be complex and life-altering, but it doesn’t stop people from making a difference and doing what they love.
Join Christine Ha, the first blind contestant of MasterChef and winner of the show’s third season, and others from the NMOSD community as they share their stories and tips for taking charge of your health.
Play videoWhat Is NMOSD
NMOSD is a rare and debilitating autoimmune disease caused by inflammation in the central nervous system (the optic nerve, brain stem and spinal cord). If not treated, this inflammation can cause repeat attacks and permanent disability, such as blindness and paralysis.1
This condition can also be difficult to diagnose and is often mistaken for multiple sclerosis (MS)—in fact, four out of 10 of those living with NMOSD report being initially misdiagnosed with MS.2 While NMOSD and MS can affect the body in similar ways, there are key differences and separate treatments. Early, accurate diagnosis is crucial to beginning treatment that may prevent potentially irreversible damage. To learn more about the differences between NMOSD and MS, check out the About NMOSD fact sheet.
~16,000 to 17,000
people in the United States live with NMOSD.3 There is an unstoppable community out there and power in learning from one another.
~80% of people
with NMOSD test positive for the antibody called anti-aquaporin-4 (AQP4), but people with MS are always negative.4 You can be tested for NMOSD with a cell-based blood test that looks for these AQP4 antibodies. If AQP4 antibodies are found in your blood, it will confirm you have NMOSD and not MS.
People who are extremely comfortable talking to their doctor about how their symptoms affect their quality of life are more than twice as likely to be satisfied with their care.5
Hear the Unstoppable Stories
of Those Living With NMOSD
Learn from the inspiring stories of real people like Christine who are living with NMOSD.
Find Resources for Living
With NMOSD
Access digital resources and educational tools, learn strategies for self-advocacy and connect with NMOSD advocacy groups.
References
1. Ajmera MR, Boscoe A, Mauskopf J, Candrilli SD, Levy M. Evaluation of comorbidities and health care resource use among patients with highly active neuromyelitis optica. J Neurol Sci. 2018;384:96-103.doi:10.1016/j.jns.2017.11.022
2. Beekman J, et al. Neuromyelitis optica spectrum disorder: Patient experience and quality of life. Neurol Neuroimmunol Neuroinflamm. 2019;6(4):e580. doi:10.1212/NXI.0000000000000580
3. Flanagan EP, Cabre P, Weinshenker BG, et al. Epidemiology of aquaporin-4 autoimmunity and neuromyelitis optica spectrum. Ann Neurol. 2016;79(5):775-783. doi:10.1002/ana.24617
4. Hamid SHM, Whittam D, Mutch K, et al. What proportion of AQP4-lgG-negative NMO spectrum disorder patients are MOG-lgC positive? A cross sectional study of 132 patients. J Neurol. 2017;264:2088-2094 doi:10.1007/s00415-017-8596-7
5. Horizon Therapeutics plc. NMOSD Community Satisfaction Survey. NMOSD Won’t Stop Me. 2023.