Epilepsy is a medical condition affecting the central nervous system that impacts over 50 million people worldwide, causing physical suffering and emotional stress, while jeopardising hopes and dreams.
Epilepsy can affect anyone, regardless of gender or ethnicity. Although epilepsy is more common in children and people over 65, it can occur at any age and remain a lifelong condition.
Help is available – for most people with epilepsy, seizures can be stopped or reduced with anti-epileptic medications prescribed by a doctor. There is hope – new discoveries in research about how the brain functions are advancing the development of medications and improving therapies.
What do you know about epilepsy?
Scientific research has helped us understand more about the brain’s complex physiology and the mechanisms involved in epilepsy, as well as which areas of the brain are activated during a seizure. One discovery is that epilepsy is a diverse group of rare diseases that tend to lead to seizures.
Studies on genetics, metabolic changes, abnormalities in the brain’s structure, the immune system, and infectious diseases are identifying potential seizure triggers, as well as methods to calm or neutralise the effects of seizures.
The role of genes is clearly significant – 50 different types of genes have recently been linked to epilepsy in the last three years1, but how they interact with changes in brain structure is complex and difficult to define.
However, the good news is that the development of knowledge is accelerating the creation of targeted medications, strengthening the promise that more therapies will become available. The most important thing is to receive the right treatment and for new therapies to be developed to allow people with epilepsy to live secure and fulfilling lives without having to interrupt their careers.
There is much hope. There is much work to be done.
Eight things you should know about epilepsy
- It is a disorder of the central nervous system
Epilepsy is a neurological condition that triggers abnormal brain activity, but it is not a mental condition.
The statistics are telling: More than six million people out of the total population of 850 million in 53 countries across Europe have epilepsy, according to WHO statistics2, with 300,000 new cases diagnosed every year. Epilepsy Alliance Europe believes that up to 40 percent of patients receive appropriate treatment3.
The organisation says the following: ”The impact of epilepsy extends far beyond seizures, as the treatment gap is high, public understanding is limited, and the social stigma causes people with epilepsy to live in isolation.”
- Not all seizures involve convulsions; seizures can appear as feelings of detachment or confusion.
There are more than 40 different types of seizures4 triggered by sudden, intense bursts of electrical activity in the brain that disrupt the signals sent to the body. These distorted signals can provoke a wide range of seizures, from convulsions and memory loss to fainting, which last for varying lengths of time.
Seizures often come without or with minimal warning and can range from mild feelings of detachment or confusion, numbness, or visual disturbances to rigidity, jerking movements, and unconsciousness.
People with epilepsy can experience more than one type of seizure. Epilepsy takes different forms for each person, and the underlying causes are complex and difficult to diagnose.
Anyone with a high fever, low or high blood sugar levels, alcohol or drug withdrawal, or brain trauma may experience a one-time seizure, but that is not epilepsy. Epilepsy is only diagnosed when two or more unprovoked seizures are experienced, and a doctor believes that more seizures are likely to occur.
Getting a diagnosis is the first step to managing the condition, and for most people, it allows them to move forward with their lives.
The World Health Organisation estimates that up to 70% of people living with epilepsy could live completely seizure-free with the right diagnosis and treatment.
- Some people remain conscious during seizures, while others lose consciousness.
Doctors categorise seizures to make it easier to prescribe appropriate treatments, but doctors face a large number of different symptoms. The area where the intense electrical activity occurs is significant for determining what type of seizure will happen.
Absence seizures make you expressionless or unable to respond and can be perceived as ”daydreaming.” You might not even realise that a seizure has occurred.
Tonic-clonic seizures cause your body to become rigid and you lose consciousness, often falling backwards and enduring a period of muscle spasms that cause jerking movements.
Other types of seizures can lead to sudden jerking or cause the body to go limp for some people. Some people experience a combination of seizures, while others only experience one type. Doctors often recommend keeping a seizure diary to help them track frequency and other characteristics for a clearer diagnosis and treatment plan.
- For 50% of patients, the cause of epilepsy is unknown.
Clear causes of seizures are injuries, brain damage at birth, stroke, or infections, but in about half of all cases, it’s difficult to define the source. The brain sends out an overwhelming number of electrical signals to control the body, and this complex system is difficult to analyse.
MRI scans can identify where brain activity occurs and provide more clues to the origin of epilepsy, but the cause of about 50% of cases is still unknown.
- Epilepsy is not a mental condition.
The vast majority of people living with epilepsy do not have cognitive or psychological problems. However, research has estimated that 35 percent of people with epilepsy suffer from depression due to the difficulty in managing seizures and how it affects their personal and professional lives.
Having epilepsy can cause anxiety. A study showed that adults with active epilepsy were three times more likely to report depression than those without epilepsy5.
Further research has shown that the areas of the brain responsible for seizures can impact mood and that enduring the stigma of epilepsy and its negative impact on work and relationships can lead to stress and anxiety.
- Sensitivity to light from exposure to flashing or flickering lights can trigger a seizure in three percent of people with epilepsy.
Light-sensitive epilepsy can be triggered by lights that flash or flicker at a frequency between 16 and 25 times per second, although for some people, it can be triggered by as little as three times per second. Flashing images and patterns can include everything from bicycle lights and Christmas lights to TV screens and strobe lights.
It is more common in children aged between 7 and 19 years. Women are slightly more likely to have light-sensitive epilepsy than men.
- Stroke and Alzheimer’s disease are the most common factors that trigger epilepsy in older adults.
People with Alzheimer’s are at an increased risk of epilepsy, and most experience seizures in the form of short periods of memory loss or lack of responsiveness rather than physically obvious seizures. The onset may be due to changes in the brain’s structure caused by cell death and brain shrinkage that comes with age.
Globally, the number of people over 65 is expected to increase from the current nine percent to seventeen percent (1.6 billion) by 2050.
- Anti-epileptic drugs control the condition for 70 percent of people by reducing electrical activity in the brain’s nerve cells.
There are more than 20 different types of anti-epileptic medications that doctors can prescribe to keep epilepsy under control. These do not cure the condition but work by controlling the levels of chemicals in the brain that affect electrical activity and potential seizures.
For about 60% of people with epilepsy, the first medication prescribed will stop the seizures relatively quickly, but for some people, it takes longer to respond to treatment and they may need another medication6.
Epilepsy and society
The personal and societal burden is enormous, but the brain is the least explored and understood part of human biology, which means that progress is slow and not as quick as in other medical fields. It has been a long journey from the Greek philosopher Hippocrates (460-377 BC) proposing that epilepsy was linked to the brain to modern technology using neuroimaging for a clearer understanding of neural functions.
Epilepsy is the third most common neurological condition in Europe after Alzheimer’s and stroke, and it remains a condition that forces uncertainty and disruption in people’s lives while being a significant burden on healthcare systems.
References:
(1) Hebbar M, Mefford HC. Recent advances in epilepsy genomics and genetic testing. F1000Res. 2020; 9: F1000 Faculty Rev-185. Published 2020 Mar 12. doi: 10.12688/f1000research.21366.1
(2) World Health Organization. Epilepsy. Accessed January 2021.
https://www.who.int/news-room/fact-sheets/detail/epilepsy
(3) Epilepsy Alliance Europe. Background. Accessed January 2021. https://www.epilepsyallianceeurope.org/about/background/
(4) Epilepsy Society. Epilepsy facts and myths. Accessed January 2021.
https://epilepsysociety.org.uk/facts-and-statistics
(5) Kobau R, Gilliam F, Thurman DJ. Prevalence of self-reported epilepsy or seizure disorder and its associations with self-reported depression and anxiety: results from the 2004 HealthStyles Survey. Epilepsia. 2006; 47(11): 1915-1921. doi:10.1111/j.1528-1167.2006.00612.x
(6) Goldenberg MM. Overview of drugs used for epilepsy and seizures: etiology, diagnosis, and treatment. P T. 2010;35(7):392-415.
