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  • Banner with resource 'NMOSD and Me 'Get Informed, Feel Empowered

    NMOSD and Me: Get Informed, Feel Empowered

    This March, let’s hear from the NMOSD voices that matter most 

    Find Out More
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What is NMOSD?

Neuromyelitis optica spectrum disorder (NMOSD) is a rare and debilitating autoimmune disease driven by
severe, recurrent central nervous system (CNS) attacks which can result in blindness, paralysis, and death.1

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Globally, NMOSD affects approximately 0.5-4 in every 100,000 people.2,3

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Over 10,000 of these people live in Europe.4

Median age 40 icon

Median age of disease onset is 40.5

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Women are 9x more likely to be impacted than men.6

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75% of seropositive patients with NMOSD may experience pain.7

Icon of eye half covered

41% of seropositive patients with NMOSD may become legally blind in at least one eye 5 years after disease onset.8

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41% of patients have also reported an initial misdiagnosis of MS (multiple sclerosis).9

Historically, NMOSD was often misdiagnosed or missed due to its similarities with other conditions, such as MS.10 However, the two diseases are distinct and NMOSD is a condition in its own right. It has a very different clinical and patient trajectory, along with outcomes and management strategies. 

It’s time to focus on NMOSD.

Symptoms

People impacted by NMOSD live with unpredictable attacks, 90% are likely to have repeated attacks within five years of an initial attack.11

Unlike other autoimmune diseases, individuals with NMOSD often do not fully recover from attacks, and permanent disability results from accumulating damage attacks.12

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Body Infographic

NMOSD vs MS

Several factors differentiate NMOSD from MS16

NMOSD

MS
Key symptom:
Severe vision impairment		 Key symptoms:
Fatigue & cognitive impairment (incl. information processing speed & attention)17
Severe acute episodes can lead to permanent disability Progressive disability caused by individual, typically mild, episodes
Permanent CNS damage Often experience better recovery from attacks
AQP4 antibody seropositive* AQP4 antibody seronegative

* 80% of people with NMOSD are AQP4 antibody seropositive, but people with MS are always seronegative.12,18

Differential diagnosis of NMOSD and MS treatment may be ineffective against, or may even exacerbate NMOSD.19

AQP4-IgG serology is a confirmatory diagnostic for NMOSD.20,21

A cell-based assay is the most reliable test and highly recommended.20,22

  • References

    1. Ajmera MR, et al. Evaluation of comorbidities and health care resource use among patients with highly active neuromyelitis optica. J Neurol Sci. 2018;384:96–103.
    2. Etemadifar M, et al. Epidemiology of neuromyelitis optica in the world: a systematic review and meta-analysis. Mult Scler Int. 2015;2015:174720.
    3. Mori M, et al. Worldwide prevalence of neuromyelitis optica spectrum disorders. Journal of Neurology, Neurosurgery & Psychiatry. 2018;89:555–556.
    4. EAfPA (European Alliance for Patient Access). 2022. Unmet needs in Neuromyelitis Optica Spectrum Disorders in Europe [online] Available at: https://gafpa.org/wp-content/uploads/2022/02/EAfPA-NMOSD-Jan2022.pdf Last accessed: 20 September 2022.
    5. Krumbholz M, et al. Very late-onset neuromyelitis optica spectrum disorder beyond the age of 75. J Neurol. 2015;262(5):1379–1384.
    6. Wingerchuk DM. Neuromyelitis optica: effect of gender. J. Neurol Sci. 2009;286(1-2):18-23.
    7. Ayzenberg I, et al. Pain, depression, and quality of life in neuromyelitis optica spectrum disorder: a cross-sectional study of 166 AQP4 antibody-seropositive patients. Neurol Neuroimmunol Neuroinflamm. 2021;8(3):e985.
    8. Jiao Y, et al. Updated estimate of AQP4-IgG serostatus and disability outcome in neuromyelitis optica. Neurology. 2013;81:1197–1204.
    9. Beekman J, et al. Neuromyelitis optica spectrum disorder: patient experience and quality of life. Neurol Neuroimmunol Neuroinflamm. 2019;6(4).
    10. Smith AD, et al. Factors associated with the misdiagnosis of neuromyelitis optica spectrum disorder. Multiple Sclerosis and Related Disroders. 2023;70:104498.
    11. Wingerchuk DM, et al. The clinical course of neuromyelitis optica (Devic’s syndrome). Neurology.1999;53:1107–1114.
    12. Borisow N, Mori M, Kuwabara S, Scheel M and Paul F. Diagnosis and Treatment of NMO Spectrum Disorder and MOG-Encephalomyelitis. Front. Neurol. 2018;9:888.
    13. Cabre P, et al. Relapsing neuromyelitis optica: long term history and clinical predictors of death. J Neurol Neurosurg Psychiatry. 2009;80:1162–1164.
    14. Huda S, et al. Neuromyelitis optica spectrum disorders. Clinical Medicine. 2019; Vol.19, No 2: 169–76.
    15. Kitley J, et al. Prognostic factors and disease course in aquaporin-4 antibody-positive patients with neuromyelitis optica spectrum disorder from the United Kingdom and Japan. Brain. 2012;135(6):1834–1849.
    16. Kim SM, Kim SJ, Lee JH, Kuroda H, Palace J, Fujihara K. Differential diagnosis of neuromyelitis optica spectrum disorders. Ther Adv Neurol Disord. 2017;10(7):265–289.
    17. Linnhoff S et al. Cognitive Fatigue in Multiple Sclerosis: An Objective Approach to Diagnosis and Treatment by Transcranial Electrical Stimulation. Brain Sci. 2019;9(5):100.
    18. Illés Z.Treatment and new evidences in neuromyelitis optica spectrum disorder. 2021;74(9–10):309–321.
    19. Uzawa A, Mori M, Hayakawa S et al. Different responses to interferon beta-1b treatment in patients with neuromyelitis optica and multiple sclerosis. Eur J Neurol. 2010;17(5):672–676.
    20. Wingerchuk DM, et al. International consensus diagnostic criteria for neuromyelitis optica spectrum disorder. Neurology. 2015;85:177-189.
    21. Lennon VA, et al. A serum autoantibody marker of neuromyelitis optica: distinction from multiple sclerosis. Lancet. 2004;364(9451):2106-12.
    22. Waters P, et al. Multicentre comparison of a diagnostic assay: aquaporin-4 antibodies in neuromyelitis optica. J Neurol Neurosurg Psychiatry. 2016;87(9):1005-15.