“I am still living in denial. I take medicines for epilepsy secretly. It’s not by choice, but the society I am living in has forced me to,” said 28-year-old Trupthi Rao (name changed).
She was diagnosed with epilepsy as a teenager, and has constantly lived in fear of when her condition would be revealed to her friends, relatives and the new family she was going to soon marry into.
Trupthi is not the only one.
There are hundreds and thousands of such people who have this genuine concern of how society would perceive their epileptic condition, hindering not just diagnosis but even treatment, explained acclaimed neurosurgeon Dr NK Venkataramana, founder of the Bangalore Regenerative Advanced Institute of Neurosciences (BRAINS).
Why are we talking about this?
International Epilepsy Day is marked on the second Monday of February every year, and neurologists have urged awareness among people — including teachers, professionals, and even doctors, especially experts in alternative therapies like Ayurveda and homoeopathy — to recognise epileptic seizures.
This year, the Epilepsy Day focus was on “stigma”.
“In many situations, diagnosis remains a concern as people do not even recognise that it’s epilepsy,” said Venkataramana.
“Especially in villages, epilepsy patients are labelled as ‘possessed’, ‘mad’, ‘ill-health person’, ‘infertile’, or ‘not fit for marriage or delivering a child’, hindering not just treatment and quality of life but even basic diagnosis,” he explained.
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What is epilepsy?
Epilepsy is a disorder of the central nervous system. Here, brain activity becomes abnormal, resulting in seizures and periods of unusual behaviour, and sometimes even loss of awareness.
According to the World Health Organisation (WHO), epilepsy affects people of all ages.
More than 50 million people worldwide have epilepsy. The WHO says 80 percent of them live in low- and middle-income countries.
While the main symptom of epilepsy is the seizure, symptoms differ from one person to the next; some can have facial seizures, and many could lose consciousness.
Neurologists South First spoke to said that while stigma around epilepsy was high in rural areas, one could see this trend in metro cities as well.
“I have seen cases where, in a metro like Hyderabad, people are in denial and believe that a ‘baba’ or saint can cure the condition,” said Dr Sudhir Kumar, a neurologist at Apollo Hospitals in the city.
“They just refuse to come to the neurologist or share with family members as they fear the labels that get attached to their condition.”
People think the person is possessed
A majority of the people, especially in the rural areas, believe that epilepsy patients are possessed.
Instead of being taken to doctors, these patients are taken to various alternate healers.
“Epilepsy attacks can be triggered when a person is fasting, has stress, has no sleep, etc. Many situations, unfortunately, collide when the patients’ families believe the individual is possessed, and they make them fast on new-moon or full-moon days. They get even more stressed when taken to tantriks, triggering an epilepsy attack,” explained Venkataramana.
“Some epilepsy seizures occur at night. The families tend to think since it’s a nighttime occurrence, the individual is possessed,” he said.
“There were practices of cutting open the head of the person and squeezing lime into it during an epileptic seizure,” added Venkataramana.
“Many do not know that even if you don’t do anything to an epilepsy patient at the time of the attack, the individual will wake up after 10-15 minutes of a seizure,” said Sudhir Kumar.
He added that there have been cases where teen girls were sexually assaulted, beaten up, or burnt with hot iron by the very people who were approached by the families to “cure” them.
“Several such cases come to me,” he said.
Patients want hush-hush treatment
Meanwhile, doctors claim that several epilepsy patients end up visiting quacks or keep the diagnosis a secret as the perceived social stigma can lead to issues regarding employment, marriage, childbirth, and the like.
“I have seen cases where patients revealed their condition in their offices and lost their job. It’s fine to not give a job to a pilot or a driver with epilepsy, but what is wrong in appointing them as a software engineer or any other such profession?” asked Sudhir Kumar.
Venkataramana said people tend to label women as “bad omen” or spread rumours that once she is epileptic, she cannot have a baby. “This is not true. There are several myths around this,” he said.
Sudhir said there are studies that prove that marriage gets delayed by five years for an epileptic woman compared to others. And then they think they have to hide this fact from their in-laws.
This, according to doctors, forces patients to keep the condition a hush-hush one and take medicines secretively.
“This again triggers an epilepsy attack as it causes stress. It is always better to educate relatives and friends about the condition and treatments,” said Venkataramana.
Related: IISc algorithm helps to identify occurrence, type of epilepsy
What are some of the triggers?
According to Venkataramana, some situations that can lead to epilepsy attacks are:
- Psychological stress
- Lack of medicines
- Missing medication
Can epilepsy be treated?
Epilepsy can definitely be treated, and the earlier the patients are given proper medical attention, the faster they can get better, said the doctors.
Sudhir Kumar explained that the majority of patients can get relief from their seizures through the use of appropriate treatment options.
“The state and Central governments have come out with several medications (generic ones) which are easily available and are not expensive. The only thing is professionals in offices, teachers in schools, and medical doctors (and those from other streams of medicine, especially Ayurvedia and homoeopathy) should be aware of how to diagnose them,” said Sudhir Kumar.
Venkataramana said a majority of patients do not seek medical help immediately after the first attack due to various reasons, including stigma, fear, and disbelief.
“Several types of epilepsy can be controlled well in their milder forms with medication. The more the delay in seeing a doctor, the more complicated it can get,” he said.
A diagnosis can be done in most cases with a history of episodes of seizures. In a few, there might be a need for Video EEG — a test that is commonly undertaken for people reporting a sudden loss of consciousness, fainting, and fits.
This may sometimes be followed by an MRI scan of the brain and a PET study of the brain.