Why Self-Advocacy Matters
Without treatment, NMOSD can lead to repeat attacks and permanent disability. In fact, 60% of those living with NMOSD who are not on treatment will have a repeat attack within one year and the majority of those who experienced vision loss following an attack will have partial or no recovery. Early detection and treatment are critical to ensure better outcomes and the chance to get back to the things you love.
Learn more about the Power of Self-Advocacy.
Being Vocal and Feeling Empowered
A recent survey showed that those living with NMOSD who are more engaged in their health, report being more satisfied with their care and are more likely to have good days.
People also report being three times as satisfied with their care if they are extremely comfortable talking to their doctor about treatments and how their disease impacts their day-to-day life.
Be Unstoppable Using the Tool Kit Below
About NMOSD
Get a high-level understanding of who NMOSD affects, the symptoms and how it differs from MS.
Know Your NMOSD Symptoms
NMOSD symptoms can vary from person to person. This checklist can help you understand yours.
Doctor Discussion Guide
Feel prepared and get organized for your doctor appointments with this list of questions and topics to discuss.
Power of Self-Advocacy Survey Results
Learn from the community about how self-advocacy affects overall disease impact and management.
NMOSD Emergency Medical Resource Card
Be prepared for the unexpected with a medical resource card to share NMOSD information with any healthcare professionals in an emergency.
Christine’s Recipe for Living With NMOSD
See Christine’s tips for advocating for your health and overcoming challenges associated with NMOSD.
Get the Support You Deserve With the Help of These Foundations
Find resources and people within the community who can help so you are never alone when managing the challenges of NMOSD.
Connect With Others
Understanding the Basics
Spanish Resources
- SRNA: Hoja Informativa: Trastorno del Espectro Neuromielitis Óptica
- Asociación Nacional de Centros de Infusión y The Sumaira Foundation: Guía de Infusión para NMO y NMOSD
- Guthy-Jackson Charitable Foundation: Florida and Spanish Speaking Patients and Caregivers Jesus & Maria Loreto: Video and Contact
Advocacy Groups
