National Epilepsy Awareness and the Fight Against Stigma

 

Founded by Dr Nirmal Surya in 2009, the Epilepsy Foundation of India initiated National Epilepsy Day, observed every year on November 17th, to raise awareness about epilepsy, educate the public on its treatment, and support individuals living with the condition.

Globally, efforts to promote epilepsy awareness date back several decades. In 1969, the Epilepsy Foundation in the United States designated November as a time for awareness campaigns. Later, in 2003, the U.S. Congress officially recognised November as National Epilepsy Awareness Month (NEAM).
During this month, initiatives such as “Share Your Purple Power” encourage people to wear purple—the colour symbolising epilepsy awareness—to show solidarity with those affected and to help spread understanding about the condition.

Pioneers in Epilepsy Research

Epilepsy research has a rich history shaped by several medical pioneers:

• John Hughlings Jackson, an English neurologist often regarded as the father of modern epileptology, was instrumental in moving the understanding of epilepsy from superstition to scientific study.

• William Philip Spratling, the first American epileptologist, played a key role in developing epilepsy training programs and advancing research in the United States.

• Henri Jean Pascal Gastaut, a French neurologist, made major contributions to the classification of epilepsy syndromes.

• William Gordon Lennox, an American neurologist, pioneered the use of electroencephalography (EEG) in epilepsy research and helped differentiate between various epilepsy syndromes.

Leaders in Epilepsy Care in India

India has also produced several prominent neurologists and epileptologists:

• Dr. Kurupath Radhakrishnan, an eminent neurologist and epileptologist.

• Dr. Satish Jain, head of the Indian Epilepsy Centre and former Professor of Neurology at AIIMS.

• Dr. Pravina Shah, a pioneer in epilepsy advocacy and the founder of the Samman Association (Epilepsy Mumbai), which provides counselling, support, and rehabilitation for people with epilepsy.

• Dr. K. S. Mani, a founding member of the Indian Epilepsy Association (IEA).

• Dr. Ashok Pillai, Professor of Neurosurgery and Neuroscience, and head of the Amrita Advanced Centre for Epilepsy, is recognised for his contributions to epilepsy surgery in India.

Understanding Epilepsy

Epilepsy is not a single disorder but a group of neurological conditions that depend on which part of the brain is affected. It is generally classified into focal epilepsy, generalised epilepsy, and combined generalised and focal epilepsy, along with numerous epilepsy syndromes.

A person is typically diagnosed with epilepsy after experiencing two or more unprovoked seizures. Causes can include genetic factors, structural abnormalities, brain injuries, tumours, metabolic disorders, autoimmune diseases, infections, or even unknown origins. There are roughly three main types, six underlying causes, and 30–40 recognised syndromes, totalling over 50 distinct forms of epilepsy.

Challenges Faced by People with Epilepsy

Epilepsy can lead to a variety of complications and challenges. Seizures may result in physical injuries, while treatments and medications can cause fatigue, dizziness, cognitive slowing, and mood changes. Many individuals experience memory issues, attention and learning difficulties, depression, and anxiety, along with feelings of fear and uncertainty about their condition.

Social stigma remains one of the greatest barriers—people with epilepsy often face discrimination in employment, social exclusion, and a lack of understanding from their communities. Despite centuries of research and medical progress, epilepsy continues to be under-recognised and underfunded worldwide.

It is crucial to continue raising awareness, improving access to care, and building inclusive environments where those living with epilepsy can lead full and supported lives.