Neuromyelitis optica (NMO) is a rare autoimmune condition that affects the myelin around the nerves, specifically the optic nerves and spinal cord. Diagnosis can be elusive, as NMO is often mistaken for multiple sclerosis (MS) or other neurological conditions.
Misdiagnosis can have life-altering consequences, as a single NMO attack can result in vision loss, paralysis, and other physical changes. There are specific criteria used to diagnose NMO, as well as an antibody test.
Unfortunately, too few people, including those in the medical community, know to look for the condition. Becoming an NMO advocate can help. Spreading awareness can lead more people to seek testing and more doctors to find the right diagnosis. For those living with NMO, advocacy is a way to get support and help others in the community.
What follows is just a short list of ways that you can become an NMO advocate, whether or not you’re directly affected by this diagnosis.
A support group — whether in person or online — can help people living with NMO and their families exchange information and find community. The Guthy-Jackson Charitable Foundation offers a list of existing online and offline support groups. The foundation also allows people to start a new group if they wish.
Fostering a community is particularly important in getting the word out about rare diseases like NMO. As researchers learn more about NMO, more people are getting the right diagnosis.
Currently, it’s thought that about 10 in 100,000 people have NMO, a rate higher than previous estimates of 1 to 4 in 100,000. That amounts to about 15,000 people in the United States living with the condition.
However, that number is small compared with the population that lives with MS, which is about 1 million people in the United States. Support groups can help people with NMO find each other and share experiences.
Charitable organizations dedicated to advocacy need money to fund research and other initiatives. Their goal is to improve the well-being of those living with NMO.
Guthy-Jackson and Siegel Rare Neuroimmune Association (SRNA) are two such organizations. You can help them by participating in fundraising events. In addition to these groups, you can also promote medical care right in your neighborhood.
Guthy-Jackson is dedicated specifically to NMO and has recommendations on its website for how to hold online fundraisers.
SRNA supports people with a handful of conditions, including NMO. They also provide information on how to raise money for the effort, including through eBay for Charity and Amazon Smiles.
You can also raise money closer to home. Contact your local hospitals or medical clinics that help people with NMO. You may be able to partner with the hospital’s fundraising arm to develop a campaign that raises awareness of NMO and supports medical access in your community.
If you’re just getting to know the NMO community, an easy way to become an advocate is to share and promote the information of advocacy organizations like Guthy-Jackson and SRNA.
Follow them on social media, share their posts, and populate your feeds with accurate, helpful information about NMO. This can help reach those who are still looking for the right diagnosis for their symptoms.
Personal stories are powerful forms of advocacy. The Guthy-Jackson Charitable Foundation is an example of how a personal narrative can bring much-needed attention to a misunderstood medical condition. A couple started the foundation in 2008 after their teenage daughter was diagnosed with NMO and there were no resources to support them.
As a family member, friend, or individual living with NMO, your story matters. Start a blog on a free blogging site like WordPress or a writing platform like Medium. This can help dispel some of the myths of NMO, show how it’s different from conditions like MS, and create a picture of how it can affect an individual’s life.
Before new therapies are approved by the Food and Drug Administration (FDA), they must undergo the clinical trials process. These trials need participants, and if you’re comfortable doing so, joining one can help the NMO community. You can search for NMO clinical trials through the ClinicalTrials.gov database.
You can also share your voice through NMO-Pro on the Guthy-Jackson Charitable Foundation website, where there are surveys and other research programs available.
Local newscasts and community programs often feature people going through meaningful experiences. You can pitch a story about NMO to a local reporter. This can be even more effective if you’re planning a fundraising event the media outlet can cover. In addition to newscasts, consider local blogs and online sources of information.
The National Organization for Rare Disorders (NORD) encourages supporters to get the word out in communities, schools, and local medical practices.
NORD will provide literature on rare disorders for you to share with your doctor in order to broaden awareness of the experiences of living with an uncommon diagnosis.
This may be also an option if you’re not directly affected by NMO but want to help put rare conditions on the radar of those in the medical community.
NMO is a life-changing condition, but it’s often misdiagnosed or diagnosed years later. NMO advocates can help build a community of people living with the condition and broaden awareness in the medical community.
In return, people experiencing NMO symptoms may get the right diagnosis faster — and once they do, gain access to more effective treatments.