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Vinay Jani’s social media truly reflects a life lived to the fullest—a loving family, a commitment to advocacy, and an active lifestyle, with a specific interest in endurance sports. As you scroll through his Instagram, it’s clear he embraces life with purpose and joy. Yet what’s not immediately visible is the journey that has shaped him—a journey marked by resilience in the face of epilepsy. Epilepsy is a brain condition that leads to repeated, unprovoked seizures, accompanied by convulsions, unusual sensations, or brief lapses in awareness.
Vinay’s journey with epilepsy began in 2005 under challenging circumstances: a severe car accident, which he has no memory of, first revealed his condition. Post-diagnosis, Vinay found himself at the start of a long, difficult road. The years that followed were marked by wrong, ineffective treatments, which only made things more challenging for him, leading to depression and significant weight gain.
On National Epilepsy Day 2024, which is annually observed on November 17, Vinay opened up about his journey with epilepsy in an exclusive interaction with OnlyMyHealth. He not only discussed his initial challenges but also revealed how he refused to let the condition take charge of his life, choosing instead to lead a life of purpose.
Years Of Treatment Challenges
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Epilepsy affects around five crore people worldwide, making it one of the most common neurological diseases globally, according to the World Health Organization (WHO).
Vinay was diagnosed with focal seizures that later developed into generalised seizures. While focal seizures start on one specific area or side of the brain, causing symptoms on one side of the body, generalised seizures start on both sides, leading to symptoms that affect both sides of the body. He faced years of treatment challenges, including medications that weren't effective. Struggling with treatments that didn’t address his seizures, Vinay found himself battling depression and questioning why this was happening to him.
Also Read: Fatima Sana Sheikh Opens Up About Epilepsy Diagnosis; Here’s Everything To Know About It
“Before being diagnosed with epilepsy, I was living a happy life. I still am, but it's just different. When I first encountered epilepsy, I kept questioning why this happened to me. I was also on an incorrect treatment path initially, which did not help my nervous system effectively. It took a long time, during which I was deeply depressed,” he recollected.
According to Dr Ravi Kumar C P, Consultant Paediatric Neurologist, Aster CMI Hospital, Bengaluru, epilepsy treatments today encompass a variety of options, primarily focusing on medications and surgical interventions tailored to meet the individual needs of each patient. Antiepileptic Drugs (AEDs) are the first line of treatment, with a wide range of medications available that target different types of seizures and patient profiles, he said.
Adding further, the doctor shared that the selection of a specific medication often depends on factors, such as the type of epilepsy, the patient's age, overall health, and potential side effects.
In Vinay's case, it was only in 2008 that he met a doctor who recommended focusing on weight loss and prescribed new medications, leading to three seizure-free years. “Afterward, I was able to taper off my medications for about a year and a half,” he said.
However, the seizures returned around 2014–15.
In 2016, Vinay switched neurologists. “My current neurologist adjusted my medications, and I started becoming more involved in understanding the treatments. In 2019, though, my epilepsy became drug-resistant,” he said.
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What Is Drug-Resistant Epilepsy?
“Drug-resistant epilepsy refers to a form of epilepsy in which seizures remain uncontrolled despite the use of at least two different antiepileptic medications,” explained Dr Kumar, adding that this condition poses significant challenges for affected individuals, as traditional pharmacological approaches may fail to provide adequate seizure control, leading to a diminished quality of life and increased risk of injury.
He added, “For those experiencing drug-resistant epilepsy, various alternative treatment options are available. These may include surgical interventions, such as resective surgery to remove the seizure focus in the brain, or neuromodulation techniques like Responsive Neurostimulation (RNS) and Vagus Nerve Stimulation (VNS).”
Narrating his experience with drug-resistant epilepsy, Vinay shared, “My neurologist tried her best to control my seizures with newer drugs that had fewer side effects. I was on a high dosage, which is usually prescribed based on body weight, but it needed to be increased as the seizures were not getting controlled. Before surgery, I was taking four anti-seizure medications.”
He added that since the surgery, he has been living a stress-free life, as he is seizure-free. He also noted that accepting the surgery made a big difference and that he feels like he is living an improved version of his previous life.
While surgery is an option, Dr Kumar noted, “The decision-making process for treatment selection is highly personalised, often involving a multidisciplinary team of healthcare professionals who assess the patient's unique circumstances and preferences to determine the most appropriate course of action.”
He explained, "Surgical interventions typically involve the resection of the brain tissue responsible for seizure activity or the implantation of devices that can help control seizures.”
Also Read: Familial Epilepsy: Expert Explains The Genetic And Environmental Factors Behind Inherited Seizures
Resilience Through Sports
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“Sports and epilepsy can go hand in hand," reads one of Vinay’s social media posts.
Recounting the beginning of his relationship with sports and physical activity, Vinay said, "When I had my first generalised seizure, I was hospitalised for about 45 days. When I was discharged, my neurologist advised me to stay active to keep my medication dosage lower. That’s when I started working out, cycling, and running marathons. I learnt from endurance sports that the mind can push the body even when the body wants to give up. I apply this mindset to all areas of life, especially in coping with epilepsy."
In general, physical activity and epilepsy management work in close association. According to Dr Kumar, regular exercise can play a crucial role in enhancing overall health and potentially reducing seizure frequency. He adds that engaging in physical activity may help improve mood, reduce stress, and promote better sleep, all of which can contribute positively to seizure control.
“For individuals with epilepsy, it is advisable to consider low-impact exercises such as walking, swimming, under supervision, or cycling only in safe places, as these activities are generally safe and can be easily adapted to individual fitness levels. Additionally, incorporating strength training and flexibility exercises, like yoga or Pilates, can further enhance physical well-being while minimising the risk of injury,” he recommended, advising consultation with one’s healthcare providers before starting any new exercise regimen.
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On Stigma, Stereotypes, And Superstition Surrounding Epilepsy
Epilepsy is often burdened by societal stigmas, stereotypes, and superstitions. Many people still view the condition as supernatural rather than recognising it as a common neurological disorder.
While Vinay’s personal experience has been partly free of the misconceptions, as he has always been open about his condition, he shared that as an advocate, he realised how many people are affected by these stigmas.
“I began to look closely at the challenges that others with epilepsy face. One of the biggest issues is social stigma. Many people still don’t fully understand what epilepsy is, and in some cases, it’s even associated with black magic or superstitions. But the reality is that epilepsy is a common neurological disorder. Acceptance is another challenge; people don’t view it with the same openness as conditions like diabetes or heart disease, even though it’s just as treatable in many cases. In fact, it might be surprising to learn that around 70% of epilepsy cases are treatable with medication, and for some, surgery is also an effective option,” he said.
He shared, “I've experienced both paths myself—I’ve managed my condition with medications, and when I developed drug-resistant epilepsy, I ultimately had to undergo surgery.”
Also Read: Living With Epilepsy: A Woman’s Unexpected Encounter With Seizures During Pregnancy
Life As An Epilepsy Advocate And Educator
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Vinay Jani’s journey as an advocate and educator for epilepsy began with a drive to challenge the stigma and misconceptions surrounding the condition. As a recipient of the prestigious IBE Golden Light Award and a Purple Day Ambassador, Vinay has used his voice to raise awareness and educate communities on epilepsy, emphasising the importance of early intervention, appropriate treatment, and social inclusion. His approach is both practical and inspiring, as he highlights the need for teacher training in seizure first aid in schools, equal employment opportunities for individuals with epilepsy, and improved insurance coverage for epilepsy treatments.
He also collaborates with organisations like Ekatwam in Delhi, the Samman Association in Mumbai, and globally with the International Bureau for Epilepsy (IBE), where he works to extend resources and support to those affected by epilepsy. His advocacy, reinforced by the World Health Organization’s (WHO's) recent recognition of epilepsy as a disability and their launch of the Intersectoral Global Action Plan, has strengthened his belief that, with greater understanding and support, epilepsy can be openly managed as a medical condition rather than feared as a social taboo.