Why Self-Advocacy Matters
NMOSD is a lifelong neurological disease that without treatment can lead to repeat attacks and permanent disability, including blindness and paralysis.1 In fact, 60% of those living with NMOSD, who are not on treatment, will have a repeat relapse within one year and the majority of those who experienced vision loss following an attack will have partial or no recovery.2,3 Early detection and treatment are critical to ensuring better outcomes for your health and the chance to get back to the things you love versus focusing on NMOSD.
Many of those within the NMOSD community have already begun to take charge of their health with great results and so can you.
Being vocal and empowered is important. 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 more “good days.”4
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.4
Be Unstoppable Using the Toolkit 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.
NMOSD Community 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 health care 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
Everyday Resources
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
- The Guthy-Jackson Charitable Foundation: Florida and Spanish Speaking Patients and Caregivers Jesus & Maria Loreto: Video and Contact
Advocacy Groups
References
1. Ajmera MR, Boscoe A, Mauskopf J, Candrilli SD, Levy M. Evaluation of comorbidities and health care resource use among patients with highly active neuromyelitis optica. J Neurol Sci. 2018;384:96-103. doi:10.1016/j.jns.2017.11.022
2. Jarius S, Ruprecht K, Wildemann B, et al. Contrasting disease patterns in seropositive and seronegative neuromyelitis optica: A multicentre study of 175 patients. J Neuroinflammation. 2012;9(14):1-17.
3. Wingerchuk DM, Lennon VA, Lucchinetti CF, Pittock SJ, Weinshenker BG. The spectrum of neuromyelitis optica. Lancet Neurol. 2007;6:805-815.
4. Horizon Therapeutics plc. NMOSD Community Satisfaction Survey. NMOSD Won't Stop Me. 2023.