Higher-Risk Populations

Certain groups of people have a higher risk for NMOSD

NMOSD, neuromyelitis optica spectrum disorder.

Your ancestry helps make you who you are.

It can also give you an increased risk of having neuromyelitis optica spectrum disorder (NMOSD).

People of African and Asian ancestry are diagnosed with NMOSD more often than people of Caucasian ancestry
Women are 5 times more likely to develop NMOSD than men

Your ancestry may also affect how likely you are to have a severe first attack

Percentage with severe first attack

58 percent of

African ancestry

46 percent of

Asian ancestry

38 percent of

Caucasian ancestry

When you have NMOSD, your body attacks its own healthy cells, damaging your brain, spinal cord, and eyes

  • NMOSD attacks are defined as new symptoms or sudden worsening of symptoms
  • Attacks can look different for everyone, but may include sharp pain, numbness or tingling, and/or vision changes
  • Attacks may cause permanent damage, and people of African ancestry may be at higher risk of their disease getting worse due to severe attacks
Every attack has the potential to damage your central nervous system, affecting your vision and/or ability to walk. Don’t wait until your next attack to talk to your doctor. Here are 3 things you can do to advocate for yourself right now:
1

Prepare to talk to your doctor about NMOSD

Use this new knowledge to get answers and care you deserve. Be sure to talk about getting the right test for an accurate diagnosis.

2

Get the support you need to become your own advocate

While several support resources exist, some are designed with you in mind, including ProjectREDTM.

3

Learn how you might manage NMOSD

Get information about a treatment for adults with anti-AQP4 antibody-positive NMOSD.

Through ProjectREDTM, Alexion is committed to addressing racial and ethnic disparities in NMOSD

The goals of Alexion’s ProjectREDTM initiative include helping you:

  • Access the care you need, when you need it
  • Build an open and trusting relationship between you and your doctor
  • Receive a timely diagnosis and begin treatment as soon as possible
  • Work with your healthcare team to understand and address your unique risks for NMOSD
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Review a helpful brochure about NMOSD and ProjectREDTM

Download ProjectRED Brochure

ProjectREDTM has identified resources that might be helpful for people of African or Asian ancestry

In addition to community advocacy and support organizations, there are several helpful resources to explore with content in multiple languages.

The Guthy-Jackson Charitable Foundation

The Guthy-Jackson Charitable Foundation provides several multilingual NMOSD resources for patients who are non-native English speakers.

The Sumaira Foundation

The Sumaira Foundation helps raise awareness of NMOSD and supports patients with content in multiple languages.

The Siegel Rare Neuroimmune Association

The Siegel Rare Neuroimmune Association (SRNA) advocates for people with rare neuroimmune disorders and hosts content in English and Spanish.

Learn more about how you can manage NMOSD

Managing NMOSD