An adult woman with her face obscured by a book about the basics of NMO.

Health Literacy and NMOSD

Receiving a chronic health diagnosis changes your priorities. Learning about the disease and how to advocate for yourself becomes critical. This is especially important when living with a rare disease like neuromyelitis optica spectrum disorder (NMOSD). A person’s health outcomes are often tied to their level of health literacy.1,2 Let's take a look at NMOSD and health literacy.

What is health literacy?

Health literacy is the skill set that helps people make health-related decisions. Health literacy involves 3 key skills for building knowledge: finding, understanding, and using information.1,2

People with a high level of health literacy are able to gather health information, grasp it, and apply it to their personal health challenges. Healthcare institutions, too, can apply these principles to help people learn and make decisions about their health.1,2

Barriers in healthcare

Certain populations in the United States face more barriers to healthcare and health literacy than others. These barriers particularly affect Black and Hispanic/Latino people, and they result largely from unjust social systems.3,4

Factors that can contribute to lower health literacy include:3,4

  • Prejudice and racism
  • Education and literacy levels
  • A primary language other than English
  • Access to safe and reliable transportation
  • Access to clean, safe housing
  • Access to reliable and healthy food sources
  • Income levels
  • Air and water quality

The impact of poor health literacy

Poor health literacy leads to poorer health outcomes. Those who do not understand their disease or how to access care suffer. Poor health literacy can result in:1,2,5

  • Making mistakes with drugs and other treatments
  • More ER visits and hospital stays
  • Missing out on preventative healthcare, such as well-visits and vaccinations
  • Trouble understanding and managing chronic illnesses

How to improve your health literacy

Becoming more health literate requires asking questions. You must be an active participant in learning about your health. Attend doctor visits prepared with questions. Take notes at each visit. Constantly ask questions, in and out of the office.1-3,5

Remember that not all information you find, especially on the internet, is factual. Learn to choose good, science-based sources over bad ones. Questions to ask yourself include:1-3,5

  • Is this a good, reputable source?
  • Can I confirm the information through multiple sources?
  • What did I hear my doctor say? Can they verify that what I heard is what they meant?
  • Does a trusted loved one or friend read the facts like I do?
  • How is the doctor weighing the risks and benefits of a proposed treatment?

Remember, it is okay if you do not understand everything at first. Learning takes time, and you learn by asking. If a treatment, drug, or follow-up instruction is unclear, insist that someone explain it in a way that you understand. Being fully informed allows you to make good health decisions.1-3,5

The role of health institutions

Health institutions have a role to play in health literacy. People who communicate health information need to ensure that information is accurate and easy to understand. They should look for signs of confusion and explain the message until they are sure the person understands it.1-3

Everyone should have the chance to be as healthy as possible. Health institutions play a big part in working toward this goal of health equity.

NMOSD and health literacy

NMOSD affects people of African and Asian descent at higher rates than other groups. A rare disease that affects populations with particular health barriers can be very hard to manage, so having good health literacy is critical for people living with NMOSD.4,5

Improving your health literacy and health outcomes is possible. Key actions to take include:4,5

  • Ask your doctor to clarify any terms or instructions you do not understand
  • Be an involved partner in your care
  • Follow NMOSD health leaders on social media
  • Access information, podcasts, and webinars from reputable NMOSD foundations

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