The autoimmune condition neuromyelitis optica (NMO) may affect the optic nerve, spinal cord, and brain. Life expectancy varies based on a person’s age, race, disabilities caused by NMO, and rate of relapses. Early and ongoing treatment greatly improves outlook and survival rates.
In NMO, an autoimmune disorder, a person’s immune system attacks the optic nerves and spinal cord, and sometimes the brain. The condition is also called Devic’s disease or NMO spectrum disorder.
NMO occurs relatively rarely. According to the National Multiple Sclerosis Society, NMO affects about 4,000 people in the United States and 250,000 people worldwide.
Survival rates for NMO vary greatly based on several factors, such as:
- the type of NMO a person has
- the disability they experience from NMO attacks
- the number of relapses they experience
Treatment greatly improves outlook, including life expectancy.
The life expectancy of a person with NMO varies widely.
Past studies have suggested that the natural 5-year mortality rate for NMO is about 22–30%, according to a 2021 research review. More recent research suggests that with treatment the rate declines to 3–7%.
Mortality depends on several factors, including:
- a person’s age
- disabilities they have, caused by NMO
- rate of relapses
Causes of death with NMO include:
- choking caused by aspiration (breathing foreign objects such as food, saliva, or stomach contents into the airway)
- severe injuries
These can occur due to disability from spine involvement.
There are two types of NMO:
- Monophasic NMO: This single acute attack of NMO lasts for about 1 month and does not recur within 3 years. It occurs very rarely. In fact, a 2020 study that followed people with NMO for a longer period of time suggests the condition might not actually exist.
- Relapsing NMO: This chronic form of NMO involves flare-ups and periods of remission.
Relapsing NMO is significantly more likely to result in disability and death.
According to a 2019 study, each NMO attack can result in additional disabilities and increased risk of disability-related mortality, especially in people who have AQP4 antibodies. About 80% of people with NMO test positive for AQP4 antibodies, per a 2019 review.
Each attack also provides an opportunity for NMO to impact the spine or brain. The
Because only about 25% of initial onset NMO attacks result in long-term disability, ongoing treatment for NMO may help prevent severe disability and death.
Early and ongoing treatment for NMO may have the best results in improving NMO life expectancy.
People with NMO who do not treat the condition have about a 90% likelihood of a relapse. Each NMO attack is usually severe.
NMO treatments aim to manage attacks as they happen and prevent future attacks. Early treatment may help significantly improve outlook.
Types of NMO treatments include:
- Intravenous corticosteroids: These manage an ongoing attack.
- Plasma exchange: Healthcare professionals typically recommend this if corticosteroids aren’t enough to manage an attack. It involves filtering blood to remove certain antibodies linked to NMO symptoms.
- Immunosuppressants: These help prevent future attacks by keeping the immune system in check. The Food and Drug Administration (FDA) has approved three drugs for NMO in anti-AQP4 positive people:
- eculizumab (Soliris)
- inebilizumab (Uplizna)
- satralizumab-mwge (Enspryng)
Healthcare professionals may also use several other immunosuppressants, including rituximab (Rituxan) and mycophenolate mofetil (CellCept), off-label to prevent NMO attacks.
No cure exists for NMO at this time. However, treatment can help improve a person’s outlook and reduce the likelihood of further disability or death.
A 2019 study suggests that early diagnosis and treatment improves NMO outlook. The researchers note that people who experienced severe spinal or optical issues at the first attack had a much better outlook with early treatment.
The authors of a research review from 2019 suggest similar conclusions. Maintaining remission using immunosuppressive drugs helped people achieve ongoing remission, and treatment critically affected outlook.
Clinical trials look at new treatments for health conditions such as NMO. In these studies, researchers test medications and therapies for safety and effectiveness.
Clinical trials are ongoing and require that a person meets certain criteria to join. An individual interested in joining a trial should talk with a healthcare professional first.
A doctor can help by:
- reviewing the requirements to determine eligibility
- determining whether a clinical trial would be a good option for the person
- recommending ongoing trials that are recruiting participants
A person can find many clinical trials posted online. ClinicalTrials.gov provides information on ongoing clinical trials happening throughout the country.
An individual can search for trials based on their condition and location. Then, they can get more information on the study and apply to participate if they qualify.
NMO is an autoimmune disease that attacks the optical nerves, spinal cord, and occasionally the brain.
Although some people may have only one attack in their lifetime, most will experience recurring attacks. People usually experience severe attacks, and each attack increases the risk of disabilities and death.
Early and ongoing treatment helps to improve outlook, including life expectancy.