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Unknown to most people, epilepsy is one of the most common neurological disorders, with an estimated 50 million people affected by it worldwide. A person is said to have epilepsy when they have experienced 2 or more unprovoked seizures. That is, they have experienced 2 or more seizures in the absence of any immediate precipitating factor, such as a hit to the head. But what exactly is a seizure? Think of it as a surge of electrical activity in the brain, in the absence of any real reason for it occurring. In other words, unwanted electrical activity taking the brain by storm (pun intended).

It is common knowledge now that brain cells communicate with one another through tiny microcurrents. These are necessary in small amounts for appropriate functioning of our brain and body. A seizure, however, is when you have a surge of electrical activity; an uncontrolled lightning storm in the brain. And just like lightning can burn down the objects in its path, this electrical storm in the brain can also burn down things, the targets being either brain cells or pathways between cells, that is, the telephone lines the cells use to talk to one another.

The advent of modern science has meant that doctors are now equipped with an armoury of drugs to help treat this disease, but for many individuals, lifelong medication is a reality. And for about 30% of those individuals, seizures persist, despite being on medication.  Epilepsy is thus best characterised as a chronic disease.

While the stereotype of a seizure involves a person lying on the floor, with their body jerking, completely unaware of their surroundings, this is but one type of seizure. The literature is in fact flooded with reports of obscure events, which upon further investigation were identified to be seizures. There are seizure types where people fall without warning. Literally, be walking one minute, and down on the floor the next. Other people may stop what they are doing midway and start running away for no apparent reason, or start talking jibberish! There are also reports of people who felt like the radio was playing their favourite songs, when in fact, they were experiencing a seizure. The location and spread of this electrical storm in the brain is what is thought to affect the way the seizure manifests.

While these may seem like interesting stories to the layman, the lived experience of this condition is far from it. In fact, for the small proportion of individuals who continue to experience seizures despite multiple anti-epileptic medications, epilepsy can be an extremely debilitating disease. For many of these people, seizures are unpredictable, occurring anywhere, without warning. In the case of children, uncontrolled seizures are a common reason for dropping out of school. Imagine sending your child to school knowing that they may fall up to 3 times in the day, even if they are just standing in the playground talking to their friends? Schools on their part often consider epilepsy to be a safety hazard for the child in question. Many a times, peers who witness an event start fearing the child, and parental complaints may prompt the school to request that the child with epilepsy be withdrawn from formal education.

In the case of adults, poor seizure control may be a reason for being unable to hold down a job, a hindrance to access education to upskill oneself and also a reason for a loss of independence. Picture a 35 odd year old woman who during her seizure, wanders around an office block and enters a neighbouring building, with no memory for how or why she arrived there.  Adults who experience frequent falls may need to constantly wear a helmet or be accompanied wherever they go, both of which can have a damaging effect on their independence, and in turn their self-esteem. Not to mention the discrimination one may face in the workplace or even a classroom setting as a result of one’s seizures. Sadly, it is not uncommon for individuals with epilepsy to be referred to as “crazy” or “retarded”. To make matters worse, the continued use of anti-epileptic drugs over a period of time can also result in significant side-effects including heightened irritability, a general slowing in behaviour and attentional issues. Drug-resistant epilepsy is thus certainly not something to be taken lightly.

Stigma: epilepsy’s unfortunate shadow
In view of the debilitating nature of this condition and lack of societal understanding for the same, epilepsy has unfortunately also been stigmatised. Family members tend to avoid disclosure of the diagnosis which often results in a lack of social support. It goes without saying that the absence of adequate social support in a disease of this chronicity can have significant negative side effects (e.g. increases the risk for depression) for both the caregiver and the patient. Ongoing discrimination, lack of equal opportunity and limited understanding of the disease has also meant that people with epilepsy are trapped in a vicious circle. They continue to be stigmatised, hence actively choose not to disclose their diagnosis, with the lack of awareness about the condition in turn serving to fuel this cycle.

The many faces of epilepsy
As we learn more and more about the brain, it is becoming increasingly clear that the brain works as a network, rather than a set of independent modules. It then follows, that a single cerebral structure may be involved in multiple networks and thus multiple functions. In turn, disruption of a network, owing to something like epilepsy, may result in disruption to multiple aspects of functioning, be it cognition, behaviour or mood. Epilepsy is thus not just a neurological disorder, but a chronic condition with significant implications for the individual’s quality of life.

What can you do to help?
Understanding is the first step to extinguishing ignorance. Understanding the realities of what life is like for a person with epilepsy will go a long way in improving conditions for them. The need of the hour is a change in societal perception of the disease, a more nuanced understanding of what the disease entails, and empathy for their plight. A small change by even a few individuals can go on to have a rippling effect. In the words of Margaret Mead, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”

So the next time you meet someone with epilepsy, be sure to remember that there is likely more to their story than meets the eye. And be mindful of the fact that just as every individual is different, every person with epilepsy is also different. But most importantly, they are first people and then a person with epilepsy.

- Prof. Deepa Bapat, Adjunct faculty

*Views expressed are personal.