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It’s one thing to receive a neuromyelitis optica (NMO) diagnosis, and another to own it — to feel you can self-advocate and boost awareness with authority and honesty in social, work, and clinical spaces. To mark NMO Awareness Month, we partnered with patient advocate Jennifer V. and other writers to create a series of articles that offer practical, supportive, and inspiring advice for how you can grow into empowerment to do exactly that. 

Switching doctors with NMOSD: When and how to do it

This is part of a series about neuromyelitis optica for NMO Awareness Month. Go here to read more. A doctor’s expertise and familiarity with a challenging condition like neuromyelitis optica spectrum disorder (NMOSD) is important, but so is having a healthcare provider who listens, understands your needs, and…

Building a strong relationship with your NMOSD healthcare provider

This is part of a series about neuromyelitis optica for NMO Awareness Month. Go here to read more. Building a strong relationship with your neuromyelitis optica spectrum disorder (NMOSD) healthcare provider may feel daunting, especially if you’re newly diagnosed or switching doctors. At first, it can feel…

Protecting autonomy, independence and finding NMOSD support

This is part of a series about neuromyelitis optica for NMO Awareness Month. Go here to read more.  All relationships require care, attention, and communication. But when living with a rare autoimmune disease like neuromyelitis optica spectrum disorder (NMOSD), voicing your needs becomes even more vital for maintaining…

How to discuss pain management strategies with your doctor

This is part of a series about neuromyelitis optica for NMO Awareness Month. Go here to read more. While neuromyelitis optica spectrum disorder (NMOSD) often causes excruciating pain that can greatly affect your quality of life, you may find that your doctor is not taking your pain as…

Why advocacy is important for the NMOSD community

This article is part of a series about neuromyelitis optica spectrum disorder for NMO Awareness Month. Go here to read more. Advocates are not chosen; circumstances force people into standing up for their rights. That’s how many people living with neuromyelitis optica spectrum disorder (NMOSD) become patient advocates.

Advice on telling your employer about your NMOSD diagnosis

This is part of a series about neuromyelitis optica for NMO Awareness Month. Go here to read more. You may be understandably reluctant to tell your employer that you have neuromyelitis optica spectrum disorder (NMOSD), especially if you are unsure…

Here’s how to explain neuromyelitis optica spectrum disorder

Neuromyelitis optica spectrum disorder affects you at work, with friends, or even in the ER. Here are some tips on how to explain the disease quickly and effectively to avoid mishaps and awkward situations.

Recent Posts

  • New biomarker may help gauge disease severity in NMOSD
  • The longest night of the year offers hope of brighter days with NMOSD
  • Advanced plasma exchange therapy effectively eases NMOSD attacks
  • Reaffirming that access to healthcare is a human right
  • Brain, spinal cord shrinkage linked to distinct NMOSD outcomes: Study
  • Reflecting on what I’m grateful for softens the edges of NMOSD
  • When my invisible illness meets my very visible disabled parking spot
  • Study IDs environmental factors tied globally to higher NMOSD risk
  • Inflammatory protein S100A9 ID’d as new treatment target in NMOSD
  • Connecting with others who have NMOSD gave me hope


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