Keyur Waghela (22) could have attended a regular college had his medical problem been diagnosed in time. The Parel resident, who is doing his graduation through a distant learning course, suffers from epilepsy and gets fits.
His parents had first noticed mild symptoms like sudden uncontrollable body jerks when Waghela was three years old. “Our general physician never took the symptom seriously,” said Rupa, his mother.
With time, the neurological disorder got aggravated and Waghela got his first big seizure that lasted 15 minutes when he was 15. That is when he was diagnosed with epilepsy.
A study by KEM Hospital in August and September among 200 epileptic patients revealed that nearly 50 per cent of the patients had at least a three-year delay in getting diagnosed and treated. According to the study, the treatment gap, which is the delay in diagnosis and treatment, is the main cause for altering mild epilepsy to refractory epilepsy, where seizures occur once in more than two months in spite of treatment. Nearly 26 per cent of the patients were found to have refractive epilepsy.
Head of neurology at KEM Hospital, Dr Sangeeta Rawat, who supervised the study, said in nearly 41.45 per cent cases, aggravation of epilepsy could have been prevented.
“Our emphasis is on preventing the problem and controlling the symptoms among those born with it,” said Rawat.
Belapur resident Mahesh Palan (40), an executive with a shipping company, and his wife Alpana (40), a teacher, have overcome the disorder with medication and precautions.
“My husband has not had a seizure for over 12 years,” said Alpana, who herself hasn’t suffered a fit for over two years. The couple met at a neurosurgeon’s clinic 10 years ago and bonded over their treatment.
“Most epileptic patients can lead a normal life,” said Dr Praveena Shah, a senior consultant at Wockhardt Hospital, Mulund. Shah also runs a non-governmental organisation called E-Cell that counsels epileptic patients.
Experts said social stigma associated with the disorder leads to low confidence levels among patients. “They fear sudden seizures that can lead to embarrassing situations,” Shah added.
Ignacious Misquitta (48), a Bandra (West) resident claimed that he was sacked from his job and labeled a “disgrace to the company” after he had a seizure during a corporate presentation. “It has happened to me many times. I have been thrown out of 15 organisations in 20 years,” Misquitta said.
However, family support and counselling sessions at the E-Cell have kept him going. Volunteers of E-Cell visit schools to educate teachers about a kind of seizure that is mostly observed in children.
“Absence seizures, where children go blank for a few seconds, may occur even 20 to 30 times a day. We educate teachers on how to identify the symptoms,” said Carol D’souza, consellor, E-Cell.
National Epilepsy Day is on Tuesday.