Understanding Epilepsy: Myths, Facts and First Aid

Enable Education hosted an online dialogue with Dr. Pratima Gulati to explore the medical, social and emotional dimensions of childhood epilepsy. Dr. Gulati opened the conversation by acknowledging the deep fear many parents experience when their child is diagnosed with epilepsy. Much of this fear, she noted, stems from significant gaps in knowledge. Families often associate seizures only with dramatic shaking or collapsing, even though many seizures in children present subtly—such as a brief jerk or momentary staring—which may indicate the onset of a larger seizure. According to her, the way clinicians speak to and guide families can dramatically influence how they process the diagnosis and cope with the condition.

She emphasized that epilepsy is more common than people realize, particularly among children between four and ten years of age. However, misconceptions remain widespread. Many parents blame themselves for their child’s condition, while broader communities often attribute seizures to myths about food, possession, or spiritual causes. She explained that epilepsy affects one in every hundred people, and nearly seventy percent can lead completely normal lives when their seizures are well-controlled with medication. The conversation also highlighted stark cultural differences: while families in Australia often seek detailed information to help manage the condition, in India epileptic seizures remain deeply taboo. This stigma contributes to delayed treatment, reliance on non-medical interventions, and general misunderstandings about the nature of the disorder. Limited access to trained neurologists in India further deepens the knowledge gap.

In discussing modern influences, Dr. Gulati noted that digital overload plays a significant role in the wellbeing of young people with epilepsy. Poor sleep, constant screen exposure, and overstimulation can all lower seizure thresholds. Although online epilepsy communities can offer helpful peer support, they also expose families to misinformation. She also pointed out that lifestyle factors such as alcohol and marijuana use can worsen seizure susceptibility, especially in adolescents.

Education systems, particularly in India, emerged as an area of major concern. Teachers often lack the training required to identify and respond to seizures, leading to unnecessary restrictions or fear-driven decisions in the classroom. Dr. Gulati stressed that children with epilepsy should be treated with dignity, with the emphasis placed on support rather than limitation. She advocated for proper teacher training, school-level seizure awareness, and ideally the presence of a nurse in every school—though she acknowledged the financial challenges this poses.

Throughout the dialogue, Dr. Gulati centred the importance of resilience—both of the child and the family. The moment of diagnosis can feel devastating to parents, who may assume that their child’s life trajectory has been fundamentally altered. However, she highlighted that families often find strength as they adapt their environment, observe improvements with medication, and learn to celebrate daily moments of progress. For clinicians, she said, the priority should be to listen to parents, guide them compassionately, and empower them with the knowledge they need to manage emergencies and support their child’s wellbeing with confidence.

She advocated for preparedness rather than rigid restrictions. Families should be equipped with clear, practical understanding of seizure triggers, rescue medications, and emergency responses. Tools such as medical ID cards—like the sunflower card—can help ensure safety in public spaces. She reiterated essential seizure first-aid principles, including staying with the person, ensuring their safety, removing food from their mouth to prevent choking, and avoiding the instinct to restrain them or place anything in their mouth. Most seizures stop within five minutes, and rescue medication should be used if they do not. Her simplified “3 Ts”—turn to the side, touch not the mouth, and time the seizure—captured these fundamentals.

In conclusion, the dialogue illuminated the overwhelming need for accessible, culturally sensitive education on childhood epilepsy. Dr. Gulati underscored that while epilepsy brings real challenges, children can lead fulfilling, unrestricted lives when families are well-supported and well-informed. The discussion served as a valuable step toward bridging the knowledge gap and building more compassionate, preparedness-driven ecosystems for children with epilepsy, especially in the Indian contexts.