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Learn More About NMOSD

NMOSD is a rare and debilitating autoimmune disease that impacts thousands of people throughout the United States. Educate yourself with essential facts about the disease.

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~22,000

people in the United
States live with NMOSD.1

A Recipe for Living With NMOSD

Christine Ha’s tips for self-advocacy


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Be your own advocate, and write your own story. After four years of searching for an accurate diagnosis for NMOSD, I realized how important it is to do your own research, ask questions and speak up for yourself while working closely with your healthcare team.


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Celebrate small victories to make a big difference. It’s important to keep looking forward and to give yourself credit for the small wins you experience.


Give yourself grace. Go easy on yourself and process the feelings of sadness, frustration and loss that can come with living with NMOSD.


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Accept help and support and know your limits. It’s OK to lean on your friends and family. You might be surprised by how much people want to help.


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Connect with others in the NMOSD community. I’ve found that sharing stories with others who are going through something similar can help you feel less alone.


REFERENCE

1. Briggs FB, Shaia J. Prevalence of neuromyelitis optica spectrum disorder in the United States. Mult Scler. Published online January 27, 2024. doi:10.1177/13524585231224683

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The Journey Blog

VIEW STORIES
Finding Your Voice: A Neurologist’s Tips for Self-Advocacy
Dr. Mitzi Joi Williams believes that learning how to self-advocate is an important skill for patients. Read her advice on how you can make sure your voice is heard.
Giving Yourself Grace – One Mother’s Guide to Navigating Mental Health and NMOSD
Taylor Ann, a busy and active mom, works to create a beautiful future even when NMOSD knocks her off-balance. Learn how she moves forward with gratitude and healthy habits.

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