Treating an epidemic of epilepsy in Nepal

It had been three months into Sonam’s marriage that a slight trembling in her hand started. At first, she blamed it on the cold and weakness. But it was followed by a full seizure. And another seizure.

When her in-laws found out, they thought she had been possessed by an evil spirit. They were quick to shun her, and take her to a dhami shaman to exorcise her. Weeks passed and Sonam seemed to have recovered till she had another seizure. Her condition quickly deteriorated and she was taken to a hospital in Kathmandu where she was diagnosed with epilepsy. 

“People in Nepal commonly misunderstand epilepsy as a sign of being possessed, or having mental health issues,” explains Ishan Adhikari, a clinical neurologist and neurophysiologist at the Medharma CliniX in Kathmandu. “The patients are stigmatised and most cannot get access to medicine and proper care, especially in rural areas.”

Better diagnostic tools and treatment of epilepsy has helped patients, but epilepsy is still largely misunderstood, owing to the lack of proper health monitoring and public awareness.

An estimated 50 million people have epilepsy worldwide and more than 5 million are diagnosed every year, 80% of them in lower middle income countries. In Nepal, the estimate is that more than 1% of the total population suffers from the condition. 

Epilepsy is one of the oldest ailments in human history, dating back to 4000 BCE in Mesopotamia. Writings on an ancient Assyrian tablet suggest that being possessed by the demon was responsible for convulsions and other involuntary movements now understood as epilepsy. 

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Epilepsy is a chronic non-communicable neurological condition characterised by recurrent seizures that involve a part or the entire body. About 10% of people have at least one seizure in their lifetime, but not all are categorised as epilepsy. 

“I have come across young children, diagnosed with epilepsy, who displayed signs of headache and light convulsions and had a deteriorating academic performance,” says Adhikari.

Abhinav was 12 when he started having headaches and light tingling in his hands, making it hard for the young student to concentrate at school or home. He stayed alone and isolated from friends and family. 

Abhinav's once good academic performance slowly deteriorated. Worried, his parents took him for a checkup where he was diagnosed with epilepsy even if he had no signs of brain injury or family history of seizures. 

“There is no specific cause of epilepsy, but its highest risk factors are severe brain injury, stroke, brain infection or brain tumour,” says Adhikari. “Family history of epilepsy plays a small role as only 10% of cases are inherited.”

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However, unlike other neurological diseases, epilepsy is treatable. Of those diagnosed, 70% can be fully treated for seizures, while the rest can be medicated for a seizure-free life. Other treatments include vagal nerve stimulators, a ketogenic diet and brain surgery.

But if undetected on time or uncontrolled despite medication, it can lead to a fatal condition called Sudden Unexpected Death in Epilepsy (SUDEP). This has been seen in people who ignore their condition despite being diagnosed due to the fear of being stigmatised. 

Indeed, people with epilepsy experience reduced access to educational and employment opportunities. One young Nepali patient who used to work at a bank was forced to quit after she had a seizure at work, she was accused of disturbing the workplace.  

Because of its association with mental illness, families in Nepal often take patients to faith healers or even force-feed urine to patients. Fearful of ostracisation, families tend to keep them hidden at home, sometimes locked up.

Epilepsy seizures disrupt electrical activities of the brain distorting neurochemicals. Due to imbalance in the brain’s homeostasis, patients can have learning difficulties, anxiety or depression which is misinterpreted as mental illness or being possessed instead of being treated for what they are, a neurologically induced condition. 

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Epilepsy accounts for more than 0.5% of the global burden of disease and has economic implications such as lost work productivity. Moreover, families have to pay expensive hospital and medication fees. The patient might also need a designated caretaker which adds to slashed family income.  

“Public financing for medical costs can alleviate the financial burden from epilepsy, the state must recognise it as a burden to the country’s economy,” says Adhikari.

Nepal also lacks equipment and anti-seizure medication to properly treat epilepsy patients, particularly in rural areas. A recent survey by Nepal League against Epilepsy showed that 70% of hospitals did not have diagnostic tools like ECG, CT scan and MRI machines. 

On the other hand, there are insufficient number of neurologists who can diagnose the disease across the country, and most are based in Kathmandu. Alternatively, there have also been cases of misdiagnosis and overdosing on medication aggravating the condition of the patient. 

Another survey on Epilepsy by Krishna Rajbhandari showed that anti-convulsants were prescribed based on geographical locations and their availability, instead of what was necessary.

A state-sponsored awareness campaign to focus on equitable diagnosis, treatment and a strong healthcare system with necessary equipment and medications is a must.

Says Adhikari: “We need many more trained doctors in epilepsy for better diagnosis and treatment, as well as medication assistance programs that deliver anticonvulsants and other medicines at a lowered rate or for free to rural areas.”

Some names have been changed.

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