Srinagar: Hameeda, 60, was dismissed as a classic case of Tassruf (spirit possession) by her faith healer husband.
“For forty years, her seizures remained untreated. It was only after her teenage son insisted on taking her to the doctor that her problem of epilepsy came to the fore. She was diagnosed with Juvenile Myoclonic Epilepsy. It is a condition characterized by recurrent seizures (epilepsy). This condition begins in childhood or adolescence, usually between ages 12 and 18, and lasts into adulthood. The most common type of seizure in people with this condition is myoclonic seizures, which cause rapid, uncontrolled muscle jerks,” the neurologist treating her said.
The doctor pointed out her husband instead of acknowledging the disease began arguing with him. “For him, it was a matter of shame that his wife suffers from it and what would society think of him now,” he said.
This case is just the tip of the iceberg. Age-old misconceptions persist, fueling fear, misunderstanding, discrimination, and social stigma about epilepsy in Kashmir.
Sample this: 25-year-old Imran (name changed) with frequent episodes of seizures was reported to Anantnag district hospital with gastrointestinal bleeding.
“His family acknowledged he has a problem with seizures. However, I felt there is more to it than meets the eye. I asked them to get his endoscopy done. What we found was shocking. We extracted nine-iron nails from his stomach,” he said.
His family had consulted a faith healer to stop his problem of epilepsy. “The faith healer had asked them to put an iron nail behind his tooth whenever he gets convulsions,” the doctor said.
As epilepsy awareness month is on, The Kashmir Monitor busted some myths and put the spotlight on the scientific facts about epilepsy and ways to better manage it.
“Epilepsy is a chronic non-communicable disease (NCD) of the brain characterized by recurrent seizures caused by excessive electrical discharges in a group of brain cells. Seizures are brief episodes of involuntary movement that may involve a part of the body (partial) or the entire body (generalized) and are sometimes accompanied by loss of consciousness and control of bowel or bladder function,” Dr. Hilal Ahmad Ganaie, Assistant Professor Neurology, SKIMS, Soura said.
He pointed out that Epilepsy is not contagious. “It is also not true that people with epilepsy are mentally ill or emotionally unstable, or are less smart. Epilepsy is a functional, physical problem — not a mental one. It can develop at any age,” he said.
He noted that having a seizure doesn’t automatically make a person epileptic; other factors can provoke a seizure, such as a binge drinking, sleep deprivation, or a new medication.
He said that identified causes of epilepsy include brain damage from a loss of oxygen or trauma during birth and low birth weight; congenital abnormalities or genetic conditions with associated brain malformations; severe head injury; stroke; an infection of the brain, certain genetic syndromes; and brain tumor.
Also, the most common type of seizures in Kashmir is “Focal seizures” (During a focal aware seizure, you stay fully aware of what’s happening around you, even if you can’t move or respond. This type of seizure used to be called a simple partial seizure), “Nocturnal seizures” (Nocturnal seizures are seizures that happen while a person is asleep. They can cause unusual nighttime behavior, such as waking for no reason or urinating while sleeping, as well as jerking and shaking of the body and “Febrile seizures” (Febrile seizures are seizures or convulsions that occur in young children and are triggered by fever. The fever may accompany common childhood illnesses such as a cold, the flu, or an ear infection, Dr. Hilal explained.
A recent study titled “Febrile convulsions in preschool children Kashmir India” was conducted by the Department of Pediatrics GB Panth Hospital, Srinagar. Headed by Dr. Suhail Naik, the study revealed that febrile convulsions were the commonest cause of convulsions in children under five years of age and the majority of them occurred in the first two years of life. Typical febrile convulsions were more common than atypical febrile convulsions.
“A total of 897 children in the age group 1 month to 6 years were admitted for recent seizures. Among these patients, 545 (60.7%) had febrile convulsions. Among Febrile convulsions, 379 had a typical febrile convulsion and 166 atypical febrile convulsions. Febrile convulsions were more common in males (308) than females (237). Febrile convulsions were more common in the first three years of life,” the study said.
Dr. Hilal emphasized that it is important to understand that epilepsy is treatable and, in many cases, the treatment is curative. “Majority of the cases (around 70 percent) can be managed with appropriate anti-seizure medications. About 30 percent of patients remain refractory to medicines and require evaluation if they are candidates for epilepsy surgery which in many cases is curative.
“There are certain advanced modalities of treatment (Neuromodulation- Vagus nerve stimulation, Responsive nerve stimulation) which can also be offered in selective cases,” he said