Education is best cure for stigma around epilepsy

More than 12 million people in India suffer from epilepsy and a significant number do not receive treatment. November 17 is observed as National Epilepsy Day to raise awareness and dispel myths around the condition.

Excerpts from the interview with Dr. Anirban Deep Banerjee, Associate Director – Neurosurgery, Institute of Neurosciences, Medanta, Gurugram.

Q: What is the disease burden of epilepsy in India?

A: In India, epilepsy carries a significant disease burden. With a conservative estimate of 1% as prevalence of epilepsy, there are more than 12 million persons with epilepsy (PWE) in India, which contributes to nearly one-sixth of the global burden. This high prevalence contributes to substantial healthcare costs, loss of productivity, and impacts on the overall quality of life for those affected.

Q: What is multifocal epilepsy?

A: Multifocal epilepsy refers to a type of epilepsy where seizures originate from multiple areas in the brain. It can be more challenging to treat as the seizures arise from different brain parts simultaneously or at different times.

Q: Who is most prone to be affected?

A: Epilepsy can affect individuals of any age, but certain groups are more prone. Children and older adults are more susceptible, with epilepsy often developing in childhood or after the age of 60. Additionally, those with a family history of epilepsy, brain injuries, infections, or developmental disorders like autism spectrum disorder are at a higher risk.

Q: Is there a gender differential?

A: Some types of epilepsy may have a slight male predominance, while others do not show a significant gender bias.

Q: How epilepsy affects a patient?

A: Epilepsy disrupts the normal functioning of the brain, causing recurrent seizures. These seizures are like electrical storms in the brain, leading to sudden, temporary changes in behaviour, awareness, or movements. This can result in various symptoms, such as convulsions, staring spells, temporary confusion, loss of consciousness, and unusual sensations or emotions.

Q: What are the available treatment options?

A: Treatment for epilepsy typically involves medications to control seizures. Anti-epileptic drugs (AEDs) are commonly prescribed and can effectively reduce or eliminate seizures in many patients. For those whose seizures do not respond to medications, other options like ketogenic diet, surgery, or nerve stimulation therapies might be considered.

Q: How has Deep Brain Stimulation (DBS) revolutionised patient care?

A: DBS has revolutionised care for those with drug-resistant epilepsy, especially those with seizures originating from multiple brain regions. It involves implanting electrodes into specific areas of the brain and delivering electrical impulses to regulate abnormal brain activity, thereby reducing the frequency and severity of seizures.

DBS for epilepsy provides a meaningful therapeutic option when medicines are no longer effective and respective surgery is not likely to be helpful. This comprises of a large cohort of significantly distressed patients. The anterior nucleus of thalamus, a small region deep inside the brain, has been identified after years of research to be an influential mediator of seizure propagation, whereby an epileptic activity initiated in a specific focused area (focal seizure) spreads to larger regions of the brain.

Neuromodulation of this important nodal point by way of DBS (‘gating-mechanism’), corroborated by the SANTE (Stimulation of the Anterior Nucleus of the Thalamus in Epilepsy) trial, showed lasting benefits in terms of reduced seizure frequency and sustainable improvements in quality of life. These results led the appropriate statutory bodies worldwide to approve this therapy for adults suffering from medically refractory focal epilepsy (with or without secondary generalisation).

Q: Are there any specific selection criteria to administer DBS?

A: The following are the selection criteria:

1. At least 18 years of age.

2. Diagnosed with epilepsy characterised by partial-onset seizures, with/without secondary generalisation.

3. Refractory to anti-epileptic medications that is, failure of adequate seizure control despite appropriate dosage of at least three anti-epileptic medicines, in mono-or polytherapy.

4. Average of over six seizures per month for last three months (with no more than 30 days in between two consecutive seizure episodes).

For instance, a DBS surgery performed by me on a young male patient in his fourth decade of life in July this year. He came with a complaint of intractable seizures for decades. His quality of life was severely compromised. Following a thorough clinico-radiological evaluation, the patient was deemed a good candidate for DBS, whereby he underwent brain-pacemaker surgery of bilateral anterior nucleus of the thalamus. He tolerated the surgery well. In his recent follow-up, considerable reduction in episodes of major seizures was noted. Resultantly, the patient’s quality of life has improved.

Q: What other new/innovative treatment options are available?

A: Innovative treatments include responsive neurostimulation devices that detect seizure activity and deliver targeted stimulation to prevent seizures. Additionally, research into new medications, genetic therapies, and non-invasive brain stimulation techniques like transcranial magnetic stimulation (TMS) shows promise in managing epilepsy.

Q: Can epilepsy be fatal?

A: While most seizures are not life-threatening, certain types of seizures or complications can be fatal. For instance, prolonged seizures (status epilepticus) or sudden unexpected death in epilepsy (SUDEP) can be life-threatening, although SUDEP is rare.

Q: What conditions – genetics or otherwise – impact epilepsy?

A: Genetics plays a role in some forms of epilepsy. Certain genetic mutations or variations can make an individual more susceptible to seizures. Additionally, brain injuries from trauma, infections, strokes, brain tumours, and developmental disorders can also contribute to the development of epilepsy.

Q: What are the role of caregivers especially given the taboos and stigma attached to epilepsy?

A: Caregivers play a crucial role in supporting individuals with epilepsy. They provide emotional support, assist in medication adherence, help during seizures, and advocate for their loved ones in navigating societal challenges, including stigma and misconceptions associated with epilepsy. Educating the community about epilepsy helps reduce stigma and fosters a more supportive environment for those affected.