What It's Like Living with NMO

Imagine waking up one day and everything you see is one big blur – you cannot see the clock on your bedside table, the next room is fuzzy, and the faces of your loved ones are unrecognizable.

Now, imagine that same scene, only this time, your friends and family question what is wrong with you. You go to your primary care doctor, and they are not sure what the cause of your symptoms could be. You spend days or even weeks having tests done without an answer. Once you get a diagnosis, you find out that there are limited treatments available. The entire time, you cannot see.

For those living with neuromyelitis optica spectrum disorder (NMO), this scene may be a reality. NMO is a rare inflammatory disease of the central nervous system (eye nerves, spinal cord, and brain). There are between 4,000 and 15,000 people in the United States living with NMO, according to different sources. About 250,000 people worldwide have NMO. 1,2

In the United States, a disease or condition that affects fewer than 200,000 people is considered a rare disease. Most rare diseases are not tracked, so the exact number of cases and people impacted is not known. The total number of Americans with a rare disease is thought to be about 25 million to 30 million people.3

But a rare disease like NMO is much more than a number. The impact of rare disease includes everything from your emotions to your pocketbook – having one can be shocking and disruptive in many ways. 4

Realities of NMO

Uncertainty

Living with NMO means facing uncertainties that others may not face. This uncertainty can get overwhelming. Many people are consumed by worrying questions, such as:

  • Will I get the treatment I need?
  • When will an attack happen?
  • Will I need help walking or seeing?
  • Can I continue to work and drive?
  • What will be the outcome of my disease?

Living with these unknowns can add to the emotional burden of living with NMO.

Isolation

Living with NMO can be isolating at times. You most likely do not know anyone else with the disease. Some of your doctors may not be aware of NMO. This can leave you feeling alone. Fatigue, problems walking or seeing, and other disease symptoms may make it hard to go to social events. Social isolation from friends and family adds to the emotional toll of NMO. 4,5

Often, a rare disease does not get the research needed to develop treatments simply because there are not very many people living with the disease.4

Frustration

Some may spend weeks, months, or even years going from doctor to doctor to get the proper diagnosis. Your symptoms are real, but having a doctor validate them with a diagnosis is often difficult with NMO.4

Mind and body

Your daily life may be impacted by the physical symptoms of NMO, including:5

  • Pain
  • Sleep problems
  • Physical activity

Finding and growing emotional strength

Building your emotional strength when faced with the many hurdles of NMO might be challenging. But when you are emotionally strong, the challenges you may face might seem more manageable.

Growing your emotional strength includes finding the right balance of physical and emotional support. This support will help you prepare for the unknowns of NMO. Who are the people you can count on? These people will be the framework for your support network. Joining support groups, advocacy groups, and social media groups, and following nonprofit organizations that support NMO research may help build your support network.6

Financial impact

Neuromyelitis optica can damage your finances. NMO is characterized by attacks that often require hospitalization and extensive follow-up care. Copays, insurance premiums, and help with things like driving or cleaning your house get expensive. Having financial support can help relieve the anxiety of finding money to pay for the extra expenses associated with NMO.7

Local NMO support groups, the National Organization for Rare Disorders, and other nonprofits are good places to start when you need financial support. Depending on which drugs you take, you may be able to find help paying for them. Ask your doctor about drugmaker assistance plans.2,5,8

NMO support services

Understanding your needs may take time. The support you need for daily living will come from various sources. It is ok to ask for help. You may find that hiring someone to help you with certain tasks allows you to have more energy during the day.

Vision loss support

Vision loss is highly personal and differs from person to person. Some people may have problems seeing at night, while others may not. Others may lose side vision (peripheral vision loss). Your vision loss needs might be different than someone else’s. Resources for vision loss include:9-11

  • Eye care specialists
  • Vision loss support groups
  • Assistive devices like screen readers and magnifiers

Movement

You may also experience movement problems as a result of NMO. Resources such as mobility devices (canes or wheelchairs), support groups, and daily task tools or equipment (such as electric jar openers) may help.

Living with NMO can have its ups and downs. The reality of living with a rare disease brings with it emotions such as isolation and frustration. Finding the support you need can help you better manage the hurdles you may face. With knowledge and support, you can live a fulfilling life surrounded by those who are your best advocates.

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Written by: Katie Murphy │Last reviewed: September 2021