Grassroots epilepsy awareness day aims to educate the public and create awareness to dispel fears and stigma surrounding the common neurological disease
March 24, 2023, CLEVELAND: It is a myth that individuals with epilepsy cannot live full, regular lives, although it is important that they seek and receive appropriate care timeously, says an expert from global health system Cleveland Clinic.
His message corresponds with Purple Day, an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. Every year, on March 26, people are invited to wear purple and host events in support of epilepsy awareness.
Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally, according to the World Health Organization. The condition is characterized by periodic and involuntary seizures, and if these are diagnosed and controlled in a timely manner through medication or surgery, epilepsy patients can lead a full, healthy life, says Imad Najm, MD, Director of the Epilepsy Center at the Cleveland Clinic Neurological Institute.
“It is important to eradicate fears and misconceptions about epilepsy. Unchecked, they can cause individuals to face stigma in school, work and social environments, and they can also prevent or delay individuals from seeking the care that they need,” says Dr. Najm.
Several common misconceptions about epilepsy are related to what seizures look like and what to do if someone is having a seizure, says Dr. Najm. “While people might expect someone with epilepsy to have convulsions and foam from the mouth, the majority of seizures are subtle. For example, a seizure might present as prolonged staring and rapid eye blinking; unusual behavior with chewing movements or hand-picking movements; a strong feeling of déjà vu; or having either rigid or overly relaxed muscles. It is much rarer to see jerking of the arms, legs, or head; falling down and/or loss of consciousness,” he says.
If an individual with uncontrolled epilepsy does have a convulsive seizure, it is highly likely the seizure will stop on its own after a minute or two, adds Dr. Najm.
He says the idea that someone will swallow their own tongue is another epilepsy myth. “Never try to stick your fingers into someone’s mouth or force it open,” he says.
“Also be gentle if moving a person away from danger so as not to add extra pressure on the body. In those rare cases where convulsions last longer than two minutes, or the person has difficulty breathing, or has a change in their color, medical help should be sought immediately,” Dr. Najm adds.
Diagnosis and treatment
The fact that seizures are often subtle can mean epilepsy goes undiagnosed, says Dr. Najm. “A challenge is that people may dismiss seizures, particularly when the symptoms are subtle, or patients may be misdiagnosed.”
Fortunately, diagnosing epilepsy can be fairly quick and easy, he adds. The diagnosis can be done through an electroencephalogram (EEG) test that records the brain’s electrical activity, and the possible cause of the disease may be assessed through a magnetic resonance imaging (MRI) scan.
There are several epilepsy treatments available, and in many cases, the earlier they are implemented, the more effective they will be. However, says Dr. Najm, this is another area where harmful misconceptions exist. “Some people avoid taking medication as they believe it can reduce their chances of having children. While there are a few studies that suggest there may be a slight impact, they are inconclusive and they should not be taken as meaning a person on these medications will become infertile,” he says.
“Similarly, some medications might raise the risk for congenital malformations to around 2 to 6%. However, doctors will work with these patients to provide protective supplements, such as folic acid, and to decrease or simplify the medications taken to find the best way to protect the mother and baby,” he adds.
Dr. Najm concludes, “It is very important that common misconceptions do not put a patient off seeking or sticking to treatment. We need to diagnose epilepsy and treat it properly and quickly, because if we do not control the seizures, it will lead to deterioration in the patient’s health, including damage to the affected neurons in the brain. In addition, without treatment, people who have seizures can fall, drown, have accidental burns or even suffer sudden unexpected and early death.”