What is Epilepsy?

Epilepsy is one of the most common neurological disorders with significant morbidity. It also causes a great deal of social burden often due to the stigma associated with it, especially in developing countries. Apart from the medical complications, these social hurdles cause significant distress to the people suffering with the disease. National Epilepsy Day is observed every year on November 17 with a motive to spread awareness about the diseaseand provide quality care for those suffering with Epilepsy

Epilepsy is an age-old neurological illness with evidence dating back to 2000 BC. For many centuries it was considered due to wrath of the gods and demonic possession and remained an intriguing puzzle for scientists and public alike causing people with epilepsy being kept isolated and stigmatized. Only at around 5th century BC Hippocrates suggested brain as the possible site of origin of the seizures and tried to give a scientific explanation to the origin of a seizure. Subsequently over the next few centuries, the actual scientific basis for seizures unfurled. However, even in this modern age, it remains a disease shrouded in myths and misconceptions, causing social and psychological misery to those living with the disease.

A seizure is an event caused by excessive and abnormal production of electrical activity in the brain interrupting the way in which a brain normally works. Seizure and epilepsy are not synonymous, and one single episode of seizure does not qualify for epilepsy. About 10% of people worldwide would experience at least one episode of seizure during their lifetime. But not all of them qualify for the definition of epilepsy. Epilepsy is a condition in which a person experiences repeated episodes of seizure and has an enduring predisposition for seizure activity. 

Around 50-60 million people live with epilepsy worldwide and 80% of them live in low- and middle-income countries. Each year, 5 million new cases are diagnosed worldwide making it one of the most common neurological disorders globally. In a study published in The Lancet, 2021, by G Singh et al, Epilepsy is the third most common neurological illness causing disability in India at 11.3%, following stroke (37.9%) and headache (17.5%). Total estimated number of people with epilepsy in India is around 10 -12 million. The states with highest disability due to epilepsy are Odisha, followed by Karnataka and Uttarakhand. However, the actual numbers are estimated to be multifold as many people with epilepsy do not come forward due to the stigma associated with the disease and as a result, many cases remain undiagnosed.

What causes Epilepsy? 

Causes of epilepsy can be broadly classified as due to 1. Trauma- either during the birth or later part of life; 2. Lack of oxygen and low levels of blood glucose during the period of birth 3. Infections of the brain 4. Tumors 5. Stroke 6. Genetic conditions 7. Autoimmune 8. Abnormal development of certain brain areas. Some of these are preventable like birth injury due to lack of oxygen and low glucose. As many as 25% of epilepsy cases can be prevented in India by improving childbirth related care.

In some people, seizures can be triggered by factors like lack of sleep and excessive stress and most of them usually have an underlying genetic predisposition.

Not all cases of epilepsy run in families and is not mandatory for some family member to have the disease for you to get it unlike most of them think. It is non communicable and does not spread from one person to the other. It can start at any age and equally effects males and females, irrespective of their caste, social and ethnic background

Seizure / epilepsy are of different types. Jerking of one part or whole of the body with frothing from mouth and tongue bite- called the generalized tonic clonic seizure, is not the only seizure type as most of us think. Certain seizures are in the form of blank stare without any movement; there can be lip smacking movements, irrelevant talk and purposeless movements of hands. Awareness of what is happening to them and surroundings may be lost or retained. Some get very minor episodes in the form of abnormal smells, sounds, lights, colors about which they are fully aware called auras and these, most of the times signal the onset of a bigger seizure. Our eyes see only what the mind knows, hence, only when one has the idea of the many types in which a seizure can occur, can they easily identify them.

Correct diagnosis and appropriate medication control the disease in 70% of the patients withepilepsy. Infact, complete cure is also possible with epilepsy surgery in selected cases, contrary to the popular belief that there is no proper treatment or cure. 

Avoiding triggers like lack of sleep, reducing stress and taking medications as prescribed are crucial for a good seizure control. In around 30%, disease can remain uncontrolled requiringa greater number of medications and in few such people, surgery can be a good option.However, treatment gap in developing countries like India is very high which can be attributed to lack of awareness, limited resources and stigma associated with the disease. Only 1 in 4 people with the disease receive the treatment they need in low-income countrieslike ours.

Why should you control epilepsy?? Epilepsy, if not controlled leads to 3 times increase in the risk of premature death called SUDEP- sudden unexpected death in epilepsy. In addition, it severely impairs the quality of life, disrupts education, vocational and social opportunities, significant mood and personality changes. However, to achieve good control, apart from correct diagnosis and treatment, one key factor is strict adherence to treatment. Many people do not take medicines correctly as prescribed and often miss doses, which interferes with adequate control of the disease.

People with good control of epilepsy can lead as normal life as any of us- they can study, play, work, marry and have children. There are many famous personalities with epilepsy, who have reached great heights despite their disease like Alexander, the great; Thomas alvaEdison who invented the bulb and Charles Dickens, the famous English writer.

Finally, mitigating stigma against epilepsy forms a key role in improving the quality of life in these people. This can be achieved only by creating public awareness, addressing the myths and misconceptions, providing a good social support and formulating robust health care policies.

Let us all join hands to bust the myths, remove the stigma, support the people with epilepsy and make the world a better place for them to live in!!