The majority of people with epilepsy live long, full, and normal lives. Take famous people with epilepsy for example. Actor Danny Glover (born 1946) is still appearing in movies! While musician Neil Young (born 1945), continues to tour live. And Major League Baseball player Hal Lanier (born 1942), was still coaching teams in 2018, when he was 76.
If you - or someone you care for - have recently been diagnosed with a seizure disorder, you might be wondering about epilepsy life expectancy. You may have heard about studies that found people with epilepsy live, on average, a few years less than other people.
That could sound worrying, but it’s very important to understand the context. There is a lot of variation. In fact, one recent study found that some people with epilepsy actually live longer than the average.
Let’s learn more about epilepsy life expectancy to understand what it all means.
Do people with epilepsy have lower life expectancy?
In 2018, a long term study of epilepsy life expectancy in Austria published some remarkable findings. People with cryptogenic epilepsy (seizures with an unknown cause - more below) who were diagnosed between 2001 and 2010, lived longer than the general population - 2.5 years more for women and 3.4 for men.
The researchers behind the study thought this might be because people with epilepsy were less likely to take part in high risk activities (driving motorbikes, or skiing, for example). They also saw their doctors more regularly, which meant other illnesses might be caught sooner.
While this is positive news, other studies have often found that people with epilepsy live shorter lives than the general population on average. One study in Denmark, for example, found the epilepsy life expectancy in that country was 10-12 years less than the average.
Epilepsy itself likely accounts for less than half of early deaths among people with epilepsy (either because of SUDEP, status epilepticus, injuries/drowning sustained during a seizure), while other lifestyle and health factors also contribute significantly.
So, how should we interpret (make sense of) these different findings? Arguably, focusing on average life expectancies isn’t that helpful, because there are so many factors that influence life expectancy statistics.
As a simple example, imagine that 10% of people with epilepsy committed suicide in their 20s. This would bring down the life expectancy average for all people with epilepsy - even if the other 90% lived as long as anyone else.
This isn’t to say that concerns about epilepsy life expectancy are not serious - nor that studies into this topic are irrelevant. It’s just that we need to dig a little deeper to understand the significance of these findings.
Factors which affect epilepsy life expectancy
There are a lot of different factors which influence epilepsy life expectancy figures. This include:
Underlying cause of epilepsy
Research has found their are significant differences in life expectancy for people with epilepsy, depending on the cause of their seizures:
- Symptomatic epilepsy: If a person’s seizures are a symptom of another condition, then they have a higher risk of mortality (death). People whose seizures begin following a stroke, because of a serious head injury, and particularly because of brain tumors, have a lower life expectancy.
- Idiopathic epilepsy: This is when the person’s seizures are likely caused by their genes. These people have a slightly lower life expectancy than the average - around two years.
- Cryptogenic epilepsy: This is when there is no known cause for the person’s epilepsy. Data vary, with some findings suggesting people may live around two years less. But other data (as noted above) suggests some people with cryptogenic epilepsy could live longer than the average.
Level of seizure control
There is strong evidence that people who achieve seizure freedom (either through medication, surgery, or ‘growing out’ of their epilepsy) have the same life expectancy as anyone else. The risk of an earlier death is higher among people whose seizures are not controlled.
Time since diagnosis
Generally speaking, the risk of a person with epilepsy dying is highest in the first few years after their diagnosis. The longer a person lives, the higher their life expectancy becomes.
Level of care
Also, the Austrian study mentioned above suggests that when you were diagnosed is also important. Epilepsy treatments have improved a lot in recent decades, so people being diagnosed with epilepsy today are likely to have a higher life expectancy.
A comorbidity is a second disease or illness that happens alongside epilepsy. People with certain comorbidities are more likely to live shorter lives. Sadly, research shows that people with learning disabilities and epilepsy have a lower life expectancy.
The findings from studies vary, but statistics suggest that up to 21% of early deaths among people with epilepsy are caused by suicide. This would, of course, significantly influence average epilepsy life expectancy statistics
As with many health conditions, social factors play an often underappreciated part in life expectancy. People from poorer backgrounds have less access to medical care, and are therefore likely to face higher risks than those who can access care more easily.
Suggested: 10 considerations for living with epilepsy
Can you improve epilepsy life expectancy?
Yes, it is absolutely possible for all people with epilepsy to improve their life chances. Talk to your treatment team for more detailed advice, but here are some simple steps:
- Do your best to continue taking your epilepsy medication (Epsy can help by giving you reminders)
- Try to stay healthy, by doing regular light exercise (with your doctor’s guidance)
- Follow a balanced diet
- Don’t smoke
- Drink alcohol in moderation
- Seek out treatments for mental health - especially for depression
Although epilepsy life expectancy is slightly lower than in the general population, it’s important to think about these figures in context. The majority of people with epilepsy can live just as long as anyone else - and as long as you receive appropriate treatment and make healthy choices, you can expect to live a full and enriching life.