Overview
Neuromyelitis optica spectrum disorder (NMOSD), also known as Devic's disease or Devic syndrome, is a rare but serious autoimmune disease that mainly attacks the optic nerves (which connect your eyes to your brain) and the spinal cord. In autoimmune diseases, the body's immune system mistakenly attacks its own healthy tissue. In NMOSD, the immune system produces proteins called antibodies — most often against a protein called AQP4 (aquaporin-4) — that damage the protective covering of nerve fibers, causing inflammation and injury. The most common symptoms are sudden vision loss or pain in one or both eyes, and weakness, numbness, or paralysis in the arms and legs. Many people also experience problems with bladder and bowel control. NMOSD tends to cause attacks, or relapses, that can leave lasting disability if not treated quickly. Unlike multiple sclerosis (MS), which it is sometimes confused with, NMOSD attacks are often more severe and recovery between attacks may be incomplete. Treatment has improved greatly in recent years. During an attack, high-dose steroids and plasma exchange (a process that filters harmful antibodies from the blood) are used to reduce damage. To prevent future attacks, doctors use long-term immunosuppressive medications. Several FDA-approved therapies now exist specifically for NMOSD, including eculizumab (Soliris), inebilizumab (Uplizna), and satralizumab (Enspryng). Early diagnosis and consistent treatment are key to protecting long-term function and quality of life.
Also known as:
Key symptoms:
Sudden vision loss or blurred vision in one or both eyesEye pain, especially when moving the eyesWeakness or paralysis in the arms or legsNumbness or tingling in the limbs or trunkPainful muscle spasmsLoss of bladder or bowel controlDifficulty walking or loss of balanceNausea, vomiting, or hiccups that won't stop (from brainstem involvement)Extreme fatigueSensitivity to heat worsening symptomsNeck or back painDifficulty breathing in severe cases
Clinical phenotype terms (17)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
7 eventsTang-Du Hospital — NA
Xuanwu Hospital, Beijing
Tianjin Medical University General Hospital — PHASE2
Uplizna is indicated for for the treatment of neuromyelitis optica spectrum disorder (NMOSD) in adult patients who are anti-aquaporin-4 (AQP4) antibody positive.
Beijing Tiantan Hospital
University of Texas Southwestern Medical Center
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
3 availableEnspryng
ENSPRYNG is indicated for the treatment of neuromyelitis optica spectrum disorder (NMOSD) in adult patients who are anti-aquaporin-4 (AQP4) antibody positive
Ultomiris
the treatment of adult patients with neuromyelitis optica spectrum disorder (NMOSD) who are anti-aquaporin-4 (AQP4) antibody-positive
Uplizna
Uplizna is indicated for for the treatment of neuromyelitis optica spectrum disorder (NMOSD) in adult patients who are anti-aquaporin-4 (AQP4) antibody positive.
Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Financial Resources
2 resourcesHealthWell Foundation — Neuromyelitis optica spectrum disorder
HealthWell Foundation
Neuromyelitis optica spectrum disorder
SOLIRIS
Alexion Pharmaceuticals Inc.
SOLIRIS Patient Support (Alexion OneSource)
Travel Grants
No travel grants are currently matched to Neuromyelitis optica spectrum disorder.
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Start the conversation →Latest news about Neuromyelitis optica spectrum disorder
1 articlesCaregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Which antibody type do I have (AQP4 or MOG), and how does that affect my treatment options?,Which long-term preventive therapy do you recommend for me, and why?,What should I do if I think I am having a new attack — who do I call and where should I go?,How often will I need MRI scans and blood tests to monitor my disease?,Are there clinical trials I might be eligible for?,What rehabilitation services do you recommend to help me recover from my last attack?,How can I manage fatigue, pain, and bladder problems alongside my main treatment?
Common questions about Neuromyelitis optica spectrum disorder
What is Neuromyelitis optica spectrum disorder?
Neuromyelitis optica spectrum disorder (NMOSD), also known as Devic's disease or Devic syndrome, is a rare but serious autoimmune disease that mainly attacks the optic nerves (which connect your eyes to your brain) and the spinal cord. In autoimmune diseases, the body's immune system mistakenly attacks its own healthy tissue. In NMOSD, the immune system produces proteins called antibodies — most often against a protein called AQP4 (aquaporin-4) — that damage the protective covering of nerve fibers, causing inflammation and injury. The most common symptoms are sudden vision loss or pain in one
How is Neuromyelitis optica spectrum disorder inherited?
Neuromyelitis optica spectrum disorder follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for Neuromyelitis optica spectrum disorder?
Yes — 5 recruiting clinical trials are currently listed for Neuromyelitis optica spectrum disorder on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Neuromyelitis optica spectrum disorder?
25 specialists and care centers treating Neuromyelitis optica spectrum disorder are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Neuromyelitis optica spectrum disorder?
2 patient support programs are currently tracked on UniteRare for Neuromyelitis optica spectrum disorder. See the treatments and support programs sections for copay assistance, eligibility, and contact details.