preprints.org > public health and healthcare > public health and health services > doi: 10.20944/preprints202405.1147.v1

Preprint Review Version 1 Preserved in Portico This version is not peer-reviewed

Version 1 : Received: 16 May 2024 / Approved: 17 May 2024 / Online: 17 May 2024 (08:46:40 CEST)

In India, epilepsy is often viewed with superstition, considered a curse rather than a medical condition. Unfortunately, many affected individuals never receive proper medical attention from neurologists, leading them to seek out alternative remedies, including sorcery. Presently, the number of neurologists in India stands at approximately 3000, a concerning figure given the prevalence of epilepsy, which is reported to affect 5.59 to 10 individuals per 1000. This equates to over one million epilepsy patients across the country, representing more than 1% of the total population. Alarmingly, rural areas experience a higher incidence of epilepsy, around 2%, compared to urban centres, where the incidence is approximately 0.5%. This stark contrast underscores the urgent need for improved access to neurological care, particularly in underserved regions.The term "epilepsy" originates from the Greek verb meaning "to seize" or "to get hold of," forming the basis of its etymology. In certain societies, epilepsy is still interpreted as a "penalty for involvement in a forbidden ritual," although perceptions vary among different cultural groups. Individuals diagnosed with epilepsy (PWE) often exhibit behaviours that have led some to speculate about demonic possession or past-life transgressions as causative factors. Consequently, the term "epilepsy" carries diverse social connotations, leading to variations in treatment approaches based on differing perspectives of the condition. Regrettably, some negative attitudes towards epilepsy have fueled stigma, enduring disability, and significant adverse outcomes for those living with the condition.The majority of unreported cases turn to sorcery, exacerbating the already high mortality rates associated with epilepsy disorder and status epilepticus. Various treatment modalities exist for patients with epilepsy to manage their seizures. Given the debilitating and life-altering nature of epilepsy, India offers a range of options including medications (antiepileptic drugs or AEDs), devices, and surgical interventions. When an individual receives a diagnosis of epilepsy (defined as experiencing at least two unprovoked seizures within a short timeframe), life can be dramatically impacted. Several cases highlight the challenges patients face, leading to an increase in Disability Adjusted Life Years (DALY) overall. For newly born infants, constant vigilance from the mother is essential to monitor for any signs of seizure activity around the clock. When a pediatric patient is enrolled in school, their education is often profoundly disrupted. Should the patient be female, her existence would undergo a profound transformation, marked by societal perceptions deeming her as unfortunate and rendering the prospect of marriage untenable. Seizures in young adults precipitate job loss, thereby exacerbating societal burdens. Conclusion: There is a pressing need to raise awareness about epilepsy among the general populace of India. Dispelling misconceptions surrounding epilepsy is essential to steer individuals away from reliance on superstition, and instead, encourage them to seek guidance from certified specialists in nervous system disorders. Thankfully, by following the treatment regimen prescribed by a qualified neurologist, patients can significantly increase their chances of living a life free from seizures, thereby enhancing their overall quality of life and personal fulfilment.

seizures; quality of life; economic burden; psychosocial impact; rehabilitation; stigma; treatment gap

Public Health and Healthcare, Public Health and Health Services

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