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Shining a Light on Your NMOSD Experience

We want to learn more about our community members living with neuromyelitis optica spectrum disorder (NMOSD). Each NMOSD journey has common threads, but the individual experiences are unique and can vary greatly.

NMOSD impacts your lives in many ways, and to better understand our community we'd like to find out more!

Let's get into some questions and shine a light on your experiences.

Misdiagnosis

Receiving your diagnosis means you can finally move forward with information, a plan, and goals. It can be frustrating and painful to be blocked from these benefits when you are not being correctly diagnosed.

Treatment

What do you and your healthcare team focus on in your NMOSD care? Is your treatment acute, such as steroids and plasma treatments, or preventative, such as biologics? Or maybe your doctor treats aspects of your NMOSD with off-label drugs. Whatever the decision, you should always discuss treatment options with your doctor.

Attacks

The intervals between NMOSD may look different for everyone. You could have weeks or years between attacks. We want to know what our community is experiencing when it comes to time between NMOSD attacks.

Accessibility and disability

With NMOSD, you might often encounter situations where it feels like the world was not designed for you. It is important to shine a light on this experience so we can all have a hand in progress and innovation.

Relationships

We all deserve love and support, regardless of health status. Has NMOSD affected your relationships and ability to maintain those relationships? It can be difficult enough trying to keep yourself healthy, and some people might find it hard to understand when you don't have time for them.

Thank you all for sharing and being a part of our incredible community. It is our goal to shed light on the unique stories of NMOSD one story at a time, but we cannot do it alone. Share your story today to help us continue the conversation! By sharing your experiences, you can help build a sense of belonging in the community, as well as support each other.

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