Caring for Those with Epilepsy

By Janine Fattaleh-Diliani

Every culture has different ways of looking at various illnesses and disorders – from mental illness to epilepsy. There has been a growing social stigma around epilepsy, as many in our community consider it a weakness or something to hide. This is harmful and damaging because it can make it harder for those struggling with epilepsy to talk openly and ask for help. Even though epilepsy is a neurological disorder and not a mental illness, it carries the same stigma as mental illness, and many people with epilepsy will often hide in shame because the strong social and cultural stigmas surrounding mental illness that are prevalent in the Middle East prevent discussions, education, and aid. Norms in the Middle East have molded us into thinking that mental health is taboo, something that should never be discussed. These norms have made us internalize our mental health issues out of fear of being labeled and ostracized because they bring “shame” and “dishonor” to our families and friends. But it is important to be able to talk about epilepsy and confront the stigma associated with it; we must break the silence and label it accurately as a medical disorder.

Epilepsy is a chronic neurological disorder that takes the form of recurring convulsive or nonconvulsive seizures and can affect people of all ages. It is not just one condition; rather, it includes a wide range of seizure types. When someone has a single seizure, it doesn’t necessarily mean that the person has epilepsy, as non-epileptic seizures can result from a range of other health conditions. A seizure occurs when there is a short circuit in the electrical transmission between neurons. It is a sudden, uncontrolled burst of electrical activity in the brain caused by complex chemical changes that occur in nerve cells (neurons). The brain has millions of nerve cells that control the way we feel, think, and move, and it uses electrical signals to send messages between nerve cells. When the regular communication between the nerve cells becomes disordered, our feelings, thoughts, or movements become momentarily confused and are temporarily out of control. This will cause a little change in the way the brain works and therefore affects the appearance and actions of a person for a short period of time.

According to the World Health Organization, around 50 million people worldwide have epilepsy, 80 percent of them live in low- and middle-income countries. Characterized by recurrent seizures that are a result of excessive electrical discharges in the brain, epilepsy is one of the fastest-growing conditions globally, and anyone, anywhere, and at any age can develop it. It is estimated that 70 percent of people with epilepsy could live seizure-free if diagnosed and treated properly.

Seizures can affect people in many different ways and come in many different forms, depending on the type of seizure and where in the brain it originates. During a seizure, normal brain activity can still happen, and sometimes, some areas of the brain can still function as they always do while other areas cannot. Although there are symptoms that are considered typical of seizures, they may be unpredictable. Common symptoms are loss of awareness or consciousness, blurry vision, visual hallucinations (objects or things are seen that aren’t really there), feelings of panic, fear, or an out-of-body sensation. There may also be physical changes such as repeated non-purposeful movements, called automatisms, which can include lip-smacking or chewing movements and repeated hand movements. Pupils may dilate or appear larger than normal, the person may bite his/her tongue (due to clenching the teeth when muscles tighten), eyes may roll back, and the person may unexpectedly lose control of urine or stool or have difficulty breathing.

If you are with someone in this situation, follow these steps:

• Remain calm and time the seizure in order to note whether it lasts more than five minutes, in which case, medical help would be required.
• Remove all the hard or sharp objects in the area in order to prevent injury.
• Do not try to restrain the person but allow the seizure to take its course.
• Place something soft underneath the person’s head.
• Do not try to put anything in the person’s mouth because you risk damaging the teeth or being bitten.
• Gently roll the person onto his/her side and push the jaw forward to prevent the tongue from blocking the person’s breathing airway. (There is no risk of swallowing the tongue.) Keep the person in this position until s/he has fully recovered in order to prevent the person from inhaling any potential post-seizure vomit. Recovery time is between 5 and 20 minutes.
• Stay with the person to provide reassurance.

November is epilepsy awareness month and is represented by a purple ribbon. While awareness ribbons don’t change the challenging reality of epilepsy, they do serve as symbols of hope. As global foundations have taken it upon themselves to raise awareness about epilepsy, it is our social and cultural responsibility to engage locally to shift the stigma surrounding epilepsy and build awareness in our community.

In November of 2021, I launched an awareness campaign in Palestine among elementary schools, private institutions, news networks, and an internationally acclaimed bank. These local organizations supported me in starting the invaluable dialogue around epilepsy in Palestine, including Jerusalem. The schools educated their students about the medical disorder; the news networks notified the public about epilepsy awareness month through their newsfeed and social media platforms; private institutions hung educational posters and a carved purple wooden ribbon; stores displayed purple ribbons on their counters; and the bank posted a flyer on social media. The goal has been to reach as much of our population as possible and to encourage local institutions to continue the momentum and support this cause on an annual basis.