How Many People are Living with Epilepsy Worldwide?

Epilepsy Worldwide

Since I’ve been living with epilepsy for 40 years, and I’ve worked in health advocacy for more than 25, I can confidently say it’s time for the epilepsy community to get it together when it comes to reporting how many people are living and dying as a result of epilepsy worldwide. Looking back over other health advocacy movements, history has proven these movements needed to show consensus on how many people are living and dying from that disease (and for those numbers to be monumental) in order to make headway in the research and advocacy.

Why am I bringing this up now you might ask? Well, its not the first time I’ve mentioned it on the site, and I suspect it won’t be the last. But I was recently reminded that the scientific community is still using a more than 20 year old statistic on posters, while also publishing more current statistics. This inconsistency frankly makes me crazy because the epilepsy community has enough trouble without the scientific community getting tangled up in how many people are living and dying as a result of this disease globally.

Outdated Global Epilepsy Numbers

For anyone out there that has not heard me speak on this, I’ll get specific: we need to stop citing the World Health Organization’s reference that there are “around 50 million people worldwide living with epilepsy“. This number has been on their website since February 2004 and has not been updated since. This number is still being referenced in 2024. It is two decades out of date and is massively under counting this disease. They need to update it if they are actually serious about their resolution passed in 2020.

The other number commonly referenced when we talk about epilepsy worldwide comes from the Epilepsy Foundation. In 2007, the Epilepsy Foundation updated their epilepsy worldwide statistics to reflect that epilepsy affected 1% of the global population. That’s when the number was updated to 65 Million. This number is still being referenced in 2024 despite the fact that it uses population data from 2007.

Additionally, this number still does not account for the fact that 80% of the cases occur in low and middle income countries.

What are the Latest Numbers for Epilepsy Worldwide?

So what are accurate numbers for epilepsy worldwide? A team at the CDC led by Rosemarie Kobau, who I can honestly say cares a great deal about the epilepsy community, published a report in 2021 stating that 1.1% of the US population is living with active epilepsy.

1.1% of the US population is living with active epilepsy.

If we apply Dr. Kobau’s prevalence number (1.1%) to current world population numbers (8.2 Billion) instead of the population from 2007, using a simple percentage calculation, we know this number should be approximately 90 Million. Honestly, it’s math that even I can do.

1.1% of the world’s current population equals ~ 90 Million.

But what about the Other 80%

Of course, this still does not account for the fact that 80% of the cases are in low and middle income countries. Let’s take a conservative approach. What would the number of people with epilepsy look like if we said 2% of the world’s population are living with epilepsy (though it’s probably closer to 4% but let’s be conservative).

2% of the world’s current population equals ~ 164 Million.

Let’s Try to Stay Current

Wouldn’t it be nice if we could get some consensus around a number like 164 Million people living with epilepsy world wide? Or even something closer to accurate which would be 328 Million or 4% of people worldwide are living with epilepsy. Then we might gain a little traction with our efforts.

I can’t wait to hear your thoughts