Spinocerebellar Ataxia Life Expectancy

Spinocerebellar ataxia (SCA) shortens life in its most common types, but there is no single figure that applies to everyone. How long someone lives depends mainly on which type of SCA they have and how early symptoms start. Most people first notice symptoms as adults, and many live for decades after diagnosis.

The short answer

For the four most studied types, large European studies estimate the average time people live after ataxia first appears:

These are averages, not predictions. Some people live much longer, and some rarer types progress so slowly that they may hardly affect life expectancy at all.

What affects life expectancy in SCA

The type. SCA1 tends to progress fastest. SCA2 and SCA3 follow broadly similar courses. SCA6 progresses slowly and mostly affects balance and coordination, so many people with SCA6 live into their seventies or eighties. You can read more about the differences on our SCA types page.

Age at onset and repeat length. In the common types, the cause is an expanded stretch of repeated DNA (a "CAG repeat") in one gene. Longer repeats usually mean symptoms start earlier and progress faster. Rarely, very long repeats cause symptoms in childhood, and these cases tend to be more severe.

Swallowing and breathing. The most common cause of death in SCA isn't the ataxia itself but its complications, especially chest infections and pneumonia caused by food or drink going down the wrong way (aspiration), and later, weak breathing.

Falls and general health. Falls, injuries and the effects of becoming less mobile also matter, as does general health, including heart and lung health.

Things that can help people stay well for longer

There's no treatment yet that slows SCA itself, but good care can reduce complications:

• Speech and language therapy to check swallowing and suggest safer textures, positions and techniques. Tell your team about coughing or choking when eating or drinking, or frequent chest infections.
• Prompt treatment of chest infections, and vaccines such as flu and pneumococcal vaccines if your doctor recommends them.
• Physiotherapy and regular exercise to keep strength and balance for as long as possible. See our page on physical exercises for SCA.
• Mobility aids and home changes to reduce falls.
• Good nutrition, with help from a dietitian if eating becomes difficult. See food, nutrition and supplements for SCA.

Is SCA inherited?

Almost all SCAs are inherited in an autosomal dominant way: a parent with the condition has a 50% chance of passing the gene change to each child. Genetic counselling can help families understand their own risk and the options for testing. For support and information, see Ataxia UK.

Outlook

SCA is a serious, progressive condition, but life expectancy varies widely and depends a great deal on the type. A neurologist with experience of ataxia can explain what's likely for a particular type and person. Several treatments that might slow progression are being tested in clinical trials.

This page is for general information and isn't a substitute for advice from your own doctor.