Navigating Epilepsy: A Candid Conversation with Dr. Jayanti Mani
By Arunima Rajan
In India, epilepsy has long been shadowed by stigma and suspicion, often bearing the brunt of myths and fears, even among the educated. Dr. Jayanti Mani, Consultant Neurologist at Kokilaben Dhirubhai Ambani Hospital, Mumbai, delves into the nuances of epilepsy care in India, offering both a clinical and empathetic perspective on what it takes to bridge the gap between medicine and societal awareness.
A Social Challenge Beyond the Doctor’s Desk
Epilepsy, Dr. Mani points out, is frequently misunderstood as something far removed from medical issues – more ‘supernatural,’ if you will. "It’s a social problem at heart,” she states with a resigned smile, acknowledging the persistence of these archaic views. “We still see epilepsy being associated with myths of possession, even in educated circles.”
And herein lies the rub. The healthcare system can only do so much when it comes to dispelling such entrenched beliefs. National Epilepsy Day, along with efforts by the Indian Epilepsy Society and Indian Epilepsy Association, have spearheaded awareness campaigns, but the challenge remains vast. “It’s a team effort. Doctors, paramedics, NGOs, and patients themselves – we all need to push this forward,” Dr. Mani emphasises. Encouragingly, she notes, “The internet has been a game-changer; the younger generation is more informed and willing to discuss their epilepsy openly.”
Dr. Jayanti Mani, Consultant Neurologist, Kokilaben Dhirubhai Ambani Hospital, Mumbai
Educating Patients Beyond the Prescription
In the labyrinthine journey of epilepsy care, treatment is only one facet of the patient’s experience. Education on lifestyle, first aid, and family preparedness is equally vital. Dr. Mani’s approach is pragmatic: “We provide first-aid cards to patients, leaflets, and translations of dos and don’ts, which they can share with their families. These resources are not just about medication—they’re about empowerment.”
But hospitals alone can’t carry the load. Dr. Mani suggests that dedicated paramedical staff could make a real impact, driving support groups and patient education programs. “It’s not a one-time session; it’s a journey. People often don’t truly grasp the condition until it affects them firsthand.”
Bridging the Care Gap: A Hub-and-Spoke Model
In a country where specialized care is often a luxury, Dr. Mani sees a solution in the hub-and-spoke model – a structured care pathway that spans from the grassroots to tertiary care. “It’s not about what one hospital can do; it’s about the whole healthcare system,” she
says firmly. The model places the family practitioner as the first point of contact, reinforcing medication adherence and lifestyle guidance. Patients needing advanced care would be referred to specialists periodically, with the most challenging cases directed to tertiary centers.
The Double-Edged Sword of Technology
When it comes to diagnostic tools like MRI, Dr. Mani’s view is a mix of optimism and pragmatism. “Technology has reached smaller towns, and that’s a positive step. But for 30% of epilepsy patients, the kind who have severe, treatment-resistant epilepsy, more advanced care is needed. Here, the rural-urban divide is stark.” The cost, she says, is often prohibitive, and while technology is reshaping epilepsy care, systemic support is essential to make it universally accessible.
The Unseen Burden: Mental Health in Epilepsy Care
Stigma isn’t just about what society thinks; it impacts the individual deeply, creating a cycle of isolation and mental health struggles. “Hospitals have a key role here,” Dr. Mani stresses, yet notes a shortage of psychologists well-versed in epilepsy. At Kokilaben, there’s an emphasis on integrating mental health support, where mood and behavior issues are discussed proactively with patients. Support groups serve as a haven for those seeking camaraderie, but they’re only a partial answer to a larger issue.
The Battle of Adherence
“Epilepsy doesn’t come with a warning label, so when patients stop taking their medication because they feel fine, it’s a recipe for disaster,” Dr. Mani warns. Educating patients on why their medications are a lifetime commitment is essential, but also challenging. “It’s a mindset shift,” she explains. “Regular follow-ups are crucial. We need to see patients not just to tweak prescriptions, but to ensure they truly understand the stakes.”
Alternative Therapies: Yoga and Calm, Not Cure
While Dr. Mani is clear that complementary therapies like yoga shouldn’t replace conventional treatment, she acknowledges their benefits for mental calmness and general well-being. “Institutes like NIMHANS have shown that yoga can help epilepsy patients manage stress, and that’s valuable,” she shares, adding that hobbies like painting or listening to music can also foster a sense of peace.
Addressing the Medication Supply Chain in Rural India
In rural India, something as simple as access to anti-seizure medication is often inconsistent. Dr. Mani believes that public health initiatives should prioritize this issue,
especially at Primary Health Centres. “When we visit centers just a few hundred kilometers outside Mumbai, even basic seizure medications are hard to come by. Partnering with government agencies to create a reliable supply chain is crucial,” she urges.
A Hopeful Frontier: Epilepsy Surgery
Despite the challenges, Dr. Mani lights up when discussing advancements in epilepsy surgery. “For patients whose lives are dominated by seizures, surgery can be a game-changer.” She recalls a recent surgery on a 15-year-old boy plagued by violent seizures. “Post-surgery, he was seizure-free. Suddenly, he could go back to school, think about the future, even dream of learning to drive. It’s transformational,” she says.
However, this beacon of hope is limited to those who can afford it. Dr. Mani points out the high cost of diagnostics and the limited availability in public hospitals. “Scaling this access in public healthcare is essential if we are to bring these life-changing solutions to more patients.”
A Message to Hospital CEOs: Epilepsy is More than Just Seizures
If there’s one thing Dr. Mani wishes every healthcare leader in India understood, it’s the invisible side of epilepsy. “It’s not just about controlling seizures; it’s about the isolation, the stigma, the emotional toll.” She also urges CEOs to invest in equipping tertiary care centers for treating complex cases. “By optimizing costs, we can open up access to treatments like epilepsy surgery, making a profound difference.”
Dr. Jayanti Mani’s insights reveal a stark reality: while medical advancements have bolstered epilepsy care, the larger challenge lies in unifying healthcare and society to lift the stigma, improve accessibility, and ultimately, allow patients to lead fuller, seizure-free lives.