Every year, on the second Monday of February (this year on 8th of February), International Epilepsy Day provides an opportunity for everyone to increase the visibility of epilepsy and raise awareness of the condition.
Epilepsy is a recurrent seizure disorder that can be really scary if you don’t know much about it. Seizures are caused by bursts of intense electrical activity in the brain, leading to a disruption to the way the brain ordinarily functions. This disruption is only temporary and usually passes in a few seconds or minutes but how people may experience the seizure is unique to them. Many may think of a fitting episode when they think of epilepsy, where people lose consciousness and fall to the floor while their limbs jerk about, but there are many different types of seizures and that's just the most visible example.
This kind of seizure is known as a tonic-clonic seizure but there are also partial seizures (either simple or complex), which may result in strange sensations, losing your sense of awareness and making random movements or noises. Absence seizures may also cause a loss in awareness but for a very short time, up to 15 seconds, and a person may just look like they're daydreaming. There are many other types of seizures and how someone reacts depends on what part of the brain is affected and how widely and quickly the burst of electrical activity spreads across the brain.
But who is affected by epilepsy?
It may surprise people who have no experience of epilepsy but it is quite common. It's one of the most common neurological conditions and affects around 50 million people worldwide.[1] Unfortunately, in around 60% of people with epilepsy, doctors don’t know the cause and it’s simply a part of that person’s life.[2]
However sometimes the reason why epilepsy develops can be directly linked to a specific incident that caused brain damage, such as meningitis. Meningitis is an infection that causes the inflammation of the membranes surrounding the brain and spinal cord. It develops very quickly, leaving little time to act and tragically this means that 1 in 10 who contract bacterial meningitis (a particularly aggressive form) will die. Out of those who contract bacterial meningitis and survive, 1 in 5 live with an after effect such as epilepsy.[3]
Meningitis can affect anyone at any age and it is life changing. Those who survive and live
with after effects may grapple with the uncertainties of life after meningitis. Despite epilepsy being common and one of the oldest conditions in written records, dating back to 4000 BC, there’s a lot of misunderstanding around it and that drives social stigma and fear. Being around a seizure may be very alarming but, in most cases, a trip to the hospital isn’t necessary.[4] Staying calm and learning seizure first aid can help you support, rather than overwhelm, the person affected.
A person who’s suddenly developed epilepsy will likely need to adapt their life in many ways but with the appropriate support from healthcare professionals the condition can be managed. By changing perceptions and addressing social barriers that discriminate against people with disabilities, people living with epilepsy can lead “normal” lives and thrive.
Unfortunately, not everyone has access to the necessary support and treatment. Up to 70% of people living with epilepsy could become seizure free with the right anti-seizure medication but in low and middle income countries there is not enough available.[5] For people who survive meningitis in low and middle income countries, there is not always a great deal of awareness of the importance of screening for neurological after effects such as seizures, leaving the issue unaddressed.[6] While individuals can support people living with epilepsy by learning more about the condition, governments can support them by building and strengthening health systems so that everyone receives the care they need.
However, what if we also try to prevent more people from developing epilepsy? According to the WHO, 25% of epilepsy cases are preventable. Prevention means preventing brain damage that could be caused by, among other things, a difficult birth, a head injury, strokes, or diseases like meningitis. The ratification of the Global Roadmap to Defeat Meningitis by 2030 not only has exciting implications for meningitis prevention because it saves lives, but also because it prevents the after effects of meningitis. There are many ways people and institutions can work to prevent epilepsy and support those affected, here at CoMO we’re working with our members to increase the global recognition that meningitis can kill or cause serious after effects like epilepsy. As a result, we should work to defeat it.
More information
Learn about seizure first aid: https://www.epilepsy.org.uk/info/firstaid/what-to-do
Learn more about International Epilepsy Day: https://internationalepilepsyday.org/
[1] https://www.who.int/news-room/fact-sheets/detail/epilepsy [2] https://www.ibe-epilepsy.org/what-is-epilepsy-2/ [3] https://www.who.int/immunization/research/development/DefeatingMeningitisRoadmap.pdf [4] https://www.who.int/news-room/fact-sheets/detail/epilepsy [5] As above [6] https://www.who.int/publications/m/item/defeating-meningitis-2030-baseline-situation-analysis