Epilepsy is nothing to be ashamed of

Introduction: Epilepsy is a common neurological disease characterized by epileptic seizures. These seizures result from abnormal electrical activity in the brain, leading to various symptoms such as convulsions, loss of consciousness, unusual sensations, or altered behaviour. About 1% of people worldwide (50 million) have epilepsy.

Epilepsy exerts adverse effects on both social and psychological well-being, manifesting as social isolation, stigmatization, and disability. Stigmatization, in particular, significantly contributes to the overall burden associated with this condition.

In numerous regions across the globe, individuals with epilepsy, along with their families, experience the burden of stigma. Erving Goffman initially delved into the concept of epilepsy as a stigmatized illness in the early 1960s only.

Stigma affects people economically, socially, and culturally, including the education for children and adolescents, and work opportunities for adults. In Asia, epilepsy is also a common negative reason for marriages and pregnancy.

This blog aims to investigate the current scenario of epilepsy in India, examining its prevalence, causes, consequences, and potential strategies for addressing this significant health concern.

Present Epidemic: Annually, approximately 5 million individuals receive a diagnosis of epilepsy, and in India, over 10 million individuals are currently dealing with epilepsy, accounting for 20% of the 50 million cases worldwide.

According to existing literature, China reports approximately 9 million individuals living with epilepsy, with a notable 63% of them being either untreated or not receiving proper treatment. The primary reason identified is the reluctance of people with epilepsy to disclose their condition, as they perceive that others might treat them differently because of their epilepsy. This hesitation to share their health status contributes to the untreated or inadequately treated cases observed in the population.

Causes:  The causes of epilepsy can be categorized into various groups . Here are examples for each category:

1. Structural Causes:
   • Brain tumours
   • Brain injuries or trauma
   • Stroke
   • Developmental abnormalities in the brain
2. Genetic Causes:
   • Genetic mutations or alterations
   • Family history of epilepsy
3. Infectious Causes:
   • Brain infections such as meningitis or encephalitis
   • Neurocysticercosis (parasitic infection of the brain)
4. Metabolic Causes:
   • Imbalances in blood sugar levels (hypoglycemia or hyperglycemia)
   • Electrolyte disturbances
   • Liver or kidney failure
5. Immune Causes:
   • Autoimmune encephalitis
   • Systemic lupus erythematosus (SLE) affects the brain
6. Unknown Causes:
   • Idiopathic epilepsy (where the cause is not identified)

It’s important to note that epilepsy is a complex neurological disorder, and in many cases, the exact cause may not be determined. Additionally, some individuals may have a combination of factors contributing to their epilepsy. The understanding of epilepsy causes continues to evolve as research in neuroscience progresses.

Consequences: Society’s tendency to perceive individuals with seizures differently results in discrimination across various life domains, including employment opportunities, education, and marriage. Adult men and women contending with epilepsy confront formidable challenges in securing stable jobs that ensure safety and independence, significantly complicating their lives. As a medical professional, it is crucial to recognize that the long-term use of antiepileptic medications may induce depression, exacerbating the challenges faced by individuals with epilepsy. Moreover, the observed stigma towards those suffering from epilepsy makes individuals more vulnerable to mental health struggles.

Addressing the issue: Drawing a parallel with diseases like diabetes, hypertension, asthma etc, which are not stigmatized, epilepsy should also be treated similarly. Individuals with epilepsy should receive full support from family, friends, and society. This will enable them to receive appropriate care and maintain optimal health. This shift in perception could potentially reduce depression, decrease suicidal tendencies, and contribute to the overall development of the country.

Conclusion: A crucial step forward involves educating communities and society to foster early detection of epilepsy, encourage prompt care-seeking behaviour, and provide comprehensive mental support to individuals with epilepsy. Spreading awareness is essential to reduce depression stemming from stigma, ultimately contributing to the development of a healthy, wealthy, and happy country. 

References: 

1. Organization WH. Epilepsy: A Public Health Imperative. Geneva (2019). p. 171. In.
2. Goffman E. Stigma: notes on the management of spoiled identity. Am Sociol Rev. Upper Saddle River, NJ: Prentice Hall (1986).
3. Trinka E, Kwan P, Lee B, Dash A. Epilepsy in Asia: disease burden, management barriers, and challenges. Epilepsia. (2019) 60 Suppl 1:7–21. doi: 10.1111/epi.14458 11.
4. Kariuki SM, Thomas PT, Newton CR. Epilepsy stigma in children in low-income and middle-income countries. Lancet Child Adolesc Health. 2021 May;5(5):314–6.
5. https://www.hindustantimes.com/lifestyle/health/purple-day-of-epilepsy-2023-top-lifestyle-changes-for-managing-seizures-101679770864540.html.
6. Li S, Wu J, Wang W, Jacoby A, de Boer H, Sander JW. Stigma and epilepsy: the Chinese perspective. Epilepsy Behav. (2010) 17:242–5. doi: 10.1016/j.yebeh.2009.12.015.
7. https://www.who.int › Newsroom › Fact sheets.