Myths and Misconceptions About Spinal Muscular Atrophy

Like many rare diseases, there are many misconceptions about spinal muscular atrophy (SMA). Most people are not familiar with SMA until a family or friend gets diagnosed with it. Experiences also vary widely between people with SMA. Even people with the same type of SMA can have much different symptoms. It is a misconception to assume anything about someone with SMA based on someone else’s experience.

Knowing the myths and misconceptions about the disease will help you understand the condition and how to speak to others about it.

Myth: People with SMA have mental and social difficulties

Fact: SMA does not affect a person’s mental, intellectual, or social abilities. People may assume from physical and speech issues that children with SMA have lower mental and emotional function. However, research shows that many children with SMA actually have higher intelligence scores than their peers by the time they reach their teen years.1

People with SMA have the same capacity and desire for socialization, relationships, and intimacy. SMA does not affect people’s ability to form relationships and emotional connections. Many have rich and fulfilling social lives.2

Myth: People can never walk

Fact: Everyone with SMA has a different experience, even if they have the same type of SMA. It is true that people with the most severe types of SMA (types 1 and 2) traditionally never can walk. However, with new treatments and more better management, this may begin to change.3-5

People with type 3 SMA show a wide variation in the ability to walk. Some people maintain the ability to walk for their entire life, while others lose the ability at some point.3-5

Myth: All people diagnosed will have a shorter lifespan

Fact: People with milder types of SMA have a normal lifespan. It is true that children with the most severe types (types 0 and 1) have a life expectancy of less than 2 years. People with type 2 SMA usually live into adulthood and may have a slightly shorter lifespan. However, new treatments and respiratory and nutritional support are improving outcomes.3,5

People with the milder types (types 3 and 4) usually have a normal life expectancy. However, it is important to keep in mind that every person with SMA is different. A SMA diagnosis alone cannot predict health outcomes.3,5

Myth: SMA is muscular dystrophy

Fact: SMA is not a type of muscular dystrophy. SMA sometimes gets grouped into the same category because muscular dystrophy is a more common neuromuscular disease. People with SMA also show similar muscle weakness as people with muscular dystrophy. However, muscular dystrophy and SMA are different diseases.3,6

Muscular dystrophy happens when there is not enough of certain proteins to form healthy muscles. On the other hand, SMA happens when a loss of motor neurons causes muscles to become inactive and waste away.3,6

Myth: This only affects children

Fact: SMA affects people of all ages. It is true that the most common type (type 1) is the most severe and affects young children. Because of this, most research and attention are focused on children with SMA. However, types 2 and 3 SMA are also common and affect adults.5

Myth: There are no treatments for the condition

Fact: As of early 2021, the U.S. Food and Drug Administration (FDA) has approved 3 treatments for SMA. The first of these is Spinraza® (nusinersen), which was approved in 2016. The other 2 are Zolgensma® (onasemnogen abeparovec-xioi) and Evrysdi™ (risdiplam).3,7,8

These treatments cannot cure SMA, but they can improve health outcomes when started early. This has made it more important for doctors to diagnose SMA and start treatment at a very young age. Even with these treatments, other forms of care are still needed, such as respiratory support and physical therapy.3,7,8

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Written by: Matt Zajac | Last reviewed: August 2021