There is far too much stigma and discrimination associated with epilepsy, declares Dr Dinesh Nayak, neurologist and head of the Advanced Centre for Epilepsy at Gleneagles Global Health City, Chennai. “I have had patients whose marriages have broken up because of their epilepsy,” he observes.
Such stigma and discrimination arise because most people don’t really understand this neurological condition that affects approximately 0.5% of the population. Till just a couple of decades ago, epilepsy was commonly understood as a mental disorder rather than a neurological one. Even today, many people believe that people with epilepsy cannot get an education, go to work, get married, have children or participate in activities like sports. “All of these beliefs are completely wrong,” asserts Dr Dinesh.
Epilepsy, the doctor explains, is a condition involving repeated, unprovoked seizures. A seizure occurs when there is a sudden, excessive electrical discharge in a part or the whole of the brain. “Basically, neurons or nerve cells communicate with each other through electric signals. If there is a sudden burst of electrical activity in the brain, the corresponding organ or system is affected,” he says.
While most of us think of epilepsy in terms of a person falling down on the ground, jerking and thrashing, and frothing from the mouth, Dr Dinesh points out that this is only one of many types of seizures that people experience. “Depending on the region of the brain in which abnormal electrical activity occurs, the manifestations can vary. Some people may experience jerking only in their facial muscles. Or someone may just go blank for a few seconds or a couple of minutes. If the visual area of the brain is affected, they may experience visual or perceptual distortions for a few minutes.”
Much of the stigma around epilepsy also arises from people’s belief that it is a permanent condition. However, says Dr Dinesh, for around 70% of patients can become seizure-free with or without medication. “With the other 30% of patients, they may not become seizure-free with medications. However, about half of such patients can be cured by surgery for epilepsy. So, for the majority of patients a diagnosis of epilepsy does not mean being condemned for life,” he explain.
This perception of epilepsy as a permanent condition also comes from the state of treatments until recent decades, adds Dr Dinesh. “The first drug for epilepsy was discovered in 1853. In the next 120 years, only five drugs were found. But since 1993, 17 new drugs have been found,” he says. These rising drug discoveries have provided doctors with a greater range of medications and combinations to treat patients who do not respond to some drugs.
A diagnosis of epilepsy should not rob a person of a fulfilling life, says Dr Dinesh. However, prevalent misconceptions lead to a range of discriminations against persons with epilepsy. With work, for instance, Dr Dinesh points out that there are only a few jobs that persons with epilepsy should avoid. People with epilepsy should avoid jobs involving operating machinery or vehicles, working on heights, high stress, and night shifts.
“A person with epilepsy is very sensitive to changes in sleep-wake cycles, and the chances of seizures rise when a person has less sleep,” explains Dr Dinesh. “I’ve often written to HR departments on behalf of my patients, telling them that my patients can be perfectly productive as long as they are not forced to take on night shifts.” Schools and teachers are also in need of awareness building on how to treat children with epilepsy, he adds.
Another area where persons with epilepsy suffer discrimination is that of marriage. Many people particularly worry about such persons passing on epilepsy to their children. However, says Dr Dinesh, only a very small minority of cases of epilepsy are truly genetic, and in most cases the condition will not be inherited.
In several countries, even activities like driving are allowed to persons with epilepsy as long as they are under treatment and have been seizure-free for periods of six months to one year, adds Dr Dinesh.
For the majority of patients – about 70%, treating epilepsy is straightforward and can be done by a primary or secondary care physician, says Dr Dinesh. The rest – who have what we call drug resistant epilepsy - may require a referral to a specialised epilepsy centre.
When it comes to the patients who do not respond to medications, highly specialised care is needed. “These are patients who have had difficulty in controlling their epilepsy, having tried two or more drugs individually and a combination of drugs,” says Dr Dinesh, and adds that nearly half of them are good candidates for surgery, which can result in cure. The treatment of others who are not candidates for surgery is continued with a few tweaks to their drug regimen, and they can also benefit from diets like the ketogenic diet.
“Unfortunately, there are lots of myths about surgery for epilepsy, including that there can be permanent brain damage. Because of this, even good candidates for surgery often don’t end up being cured. This happens across the world, and this myth must be busted. Surgeries are very safe, and their morbidity and mortality are very low,” he says.
For complex cases, it is necessary to have comprehensive treatment facilities with cutting-edge technical infrastructure such as video-EEG, MRI, PET scan, neuronavigation, stereotaxy, intracranial EEG, stero-EEG, and so on – all of which are present in Gleneagles Global Health City, Chennai. They also require a team of experts such as specially trained epileptologists, epilepsy surgeons, neuroradiologists, neuropsychologists, psychiatrists, occupational therapists, and speech and language therapists.
This article has been created in association with Gleneagles Global Health City, Chennai.