Q&A: Epilepsy

Prof. Valery Feigin answers key questions about the latest research on epilepsy.

This transcript has been lightly edited for clarity

Why is it important that we understand the burden of epilepsy at the global, regional, and national levels?

Epilepsy is one of the most serious and important neurological disorders. It is actually the seventh most burdensome neurologic disorder in the world. But the problem with epilepsy is that, in most countries of the world, probably in 95%, there is no accurate data on frequency, distribution, the risk factors of epilepsy, and therefore, public health cannot develop evidence-based strategies to reduce the burden of epilepsy and improve health care for people with epilepsy.

And the other reason for doing large epidemiological studies of epilepsy is to provide some insight into the geographical distribution, the influence of various populations, socioeconomic factors on the burden of and frequency of epilepsy.

What were the key findings from your research?

In brief, we found that almost 1%, to be exact, 0.7%, of the global population, or almost 52 million people, are currently suffering from active epilepsy. And we defined active epilepsy as epilepsy that has at least one seizure in the last five years, regardless of anti-seizure medications. The second, probably most important finding, was that our study included in the analysis not only active, primary or idiopathic epilepsy, but also secondary epilepsy, epilepsy that has some underlying known cause, such as abnormalities in the brain or chemical changes in the brain. And it is important from our standpoint because it gives public health information on how this secondary epilepsy could be prevented.  

And, not to forget, another important finding, that over the last three decades the burden of epilepsy in the world has increased quite significantly, by 15%, mostly because of this secondary epilepsy. The causes are difficult to define of that growth, but probably brain birth defects, infections, various degenerative disorders of the brain. We all know they are on the rise, and they may be associated with epilepsy.  

And the last but not least important finding was that the bulk of the burden of epilepsy, 80%, lies in low- to middle-income countries, particularly countries such as those in sub-Saharan Africa and Central Asia. And we certainly need to improve the situation for people suffering from epilepsy.

What needs to be done to improve the situation for epilepsy sufferers, and to better understand epilepsy?

I would say that the most important thing, in low- and middle-income countries in particular, where the bulk of the burden is, is to improve accessibility to specialized neurological care and medications for epilepsy because this access costs money and is not always available. And this is a great barrier to improving outcomes in people with epilepsy. Secondly, it is important to dispel some misconceptions about epilepsy, because it actually prevents better care and better social adaptation of people with epilepsy.

And to improve the situation, we do need good-quality epidemiological research, especially in various countries, low- and middle-income countries in particular, studying the risk factors of epilepsy, because still we have no well-established risk factors for epilepsy. For secondary epilepsy, we know causes, but for idiopathic epilepsy, we presume they are genetic causes but we don’t have good genetic research to pick out which genetic markers are the most important for epilepsy. So more research is needed.