In America: What's That?

The 2023 In America survey has now come to a close. We're grateful for those who have participated in this survey to help paint a detailed picture of Neuromyelitis Optica Spectrum Disorder in the United States. Keep an eye out for the next In America survey, which will take place in early 2024!

Medical gaslighting, misdiagnosis, and finding solid and close-knit communities. These are some experiences you, the Neuromyelitis-Optica.net community, have given a voice to. Living with NMO is that, and so much more. We hope to continue to build an authentic, communal space where everyone impacted by this disease has a place to learn, share, and be, but to do so, we ask for your help.

To learn more about the challenges of living with Neuromyelitis Optica Spectrum Disorder (NMOSD, or NMO), we are conducting our In America survey. By taking our survey, you can bring awareness to the realities of life with NMO and help others feel less alone.

What is the survey about?

The survey covers “basics” like your diagnosis and treatment experiences but also dives into the nitty-gritty of NMO, like the emotional impact and day-to-day challenges. In addition, you’ll have the opportunity to not only tell us about NMO but also any other conditions you are living with and how each impacts your life.

Why should you take the survey?

Each person who takes the In America survey contributes to a better understanding of NMO as well as other health conditions. With better knowledge, we can help others who are navigating health challenges feel less alone. We hope to capture a full picture of all aspects of your health experiences and bring greater awareness to conditions that may be misunderstood. Sharing your experiences through the survey can reveal how similar each person’s journey is, as well as the differences that make each journey unique.

What will the survey ask me?

The survey will ask about different moments of your journey with Neuromyelitis Optica, including:

• Diagnosis
• Symptoms and symptom management
• Quality of life
• Treatment awareness and experience
• Other diagnosed conditions

We do not require your name, address, or other personal information for you to participate. You also do not have to take the survey all at once. Feel free to bookmark the survey in your Internet browser and return when you are able. You may continue where you left off.

How do we use the In America survey data?

Survey responses help us and our partners better understand the NMOSD community. All survey responses remain confidential, reported only in total. This means your specific responses will not be reported individually. All information will become property of Health Union, LLC.

What happens after I take the survey?

After the survey closes each year, neuromyelitis-optica.net will share the responses back to the community and highlight important findings from the survey. You can read last year's NMO In America survey findings here.

But that is not all. Throughout the year, we publish articles and videos based on what we learned from the survey. We hope this survey-driven content contributes to the information available to those affected by NMO and helps you all connect with others who walk the same path.

Sharing your story can make a difference, and we believe each story can change how others understand life with Neuromyelitis Optica Spectrum Disorder.

Questions? Comment below, or email us at contact@neuromyelitis-optica.net for more information.