Health Literacy and SMA

For people with spinal muscular atrophy (SMA), health literacy is crucial. SMA is a genetic disorder that affects muscle strength and movement. Here is why health literacy matters, the impacts of poor health literacy, and how to improve your health literacy.¹

What is health literacy?

Health literacy is the ability to understand and use health information to make informed decisions about your health. It includes knowing how to:^2,3

• Read prescription labels
• Follow doctor’s instructions
• Make sense of medical bills
• Understand health insurance forms

For example, someone with good health literacy can understand the benefits and side effects of a drug, schedule and keep track of medical appointments, and recognize when to get symptoms checked out. Health literacy is also about being empowered to take charge of your health and make the right choices for you.^2,3

Why health literacy matters for people with SMA

SMA is a complex condition. It requires understanding various medical terms, treatments, and care plans. For those with SMA, being health literate means you can:^2,3

• Understand the basics of SMA and its progression
• Make informed decisions about treatments and therapies
• Communicate well with doctors
• Manage the daily care and lifestyle changes needed for living with SMA

The impact of poor health literacy

When health literacy is low, it can lead to misunderstandings and mismanagement of SMA. This may lead to:^2,3

• Missed medical appointments or treatments
• Incorrect use of medicines or therapies
• Increased hospitalizations due to complications
• Reduced quality of life for the person with SMA

Poor health literacy can also cause anxiety and stress. It can be hard to navigate the healthcare system and make the best decisions for yourself or someone you care for who has SMA. Try not to feel ashamed or embarrassed if you do not understand something. Everyone struggles at some point with understanding complex health information.³

Understanding the progressive nature of SMA

SMA is a progressive disease. This means it gets worse over time. There are different types of SMA. Some are more severe than others. Understanding the type and progression of SMA you are dealing with can help you manage the condition better.¹

Health literacy for children with SMA

For kids with SMA, health literacy means helping them understand their condition in an age-appropriate way. If you are a parent or caregiver of a child with SMA, you can help them build health literacy by:⁴

• Explaining medical procedures and treatments in simple terms
• Teaching them about their medicines and why they need them
• Encouraging them to ask questions and express their feelings about their health

Barriers to care

Many things can be a barrier to getting adequate SMA treatment. Here are some common barriers:⁵

• Complex medical information – Medical jargon can be overwhelming and hard to understand.
• Limited financial resources – SMA treatment is very expensive.
• Access to treatment – SMA treatment is not available everywhere. You may have to travel to get SMA care. Find a treatment center near you.

How to improve your health literacy

Improving health literacy comes down to you and your medical team. Those with SMA will likely have a comprehensive healthcare team. Make sure they give you clear, easy-to-understand information. Ask questions if they use terms you do not understand. A good healthcare provider will listen to your concerns and make sure you know how to act on the information they give you.^1,5,6

Here are other ways to improve your health literacy:⁶

• Ask your healthcare team to explain things in simpler terms.
• Look for information from trusted sources like medical institutions and SMA organizations like SMA Foundation and Cure SMA.
• Take notes during doctor’s appointments to help remember important details.
• Repeat back what you have heard so you understand everything correctly.
• Diagrams and videos can make complex information easier to understand.