It’s just days before she flies out to Singapore to receive the Outstanding Person with Epilepsy 2014 award, by the IBE (International Bureau of Epilepsy) for India, Shenaz Haveliwala can’t contain her excitement. Meeting delegates at the annual Asian-Oceanic Epilepsy Congress means she will be in the company of people from across the world who, like her, have battled the neurological disorder with rectitude. “I am eager to learn how they have coped with it,” says the 27-year-old, when we meet her at her Mazgaon home. “Mine has been a battle, but one that I believe, I have conquered well.”
Epilepsy refers to a group of related disorders characterised by a tendency for recurrent seizures or convulsions.
Haveliwala was 19 when she suffered her first convulsion. She was a student of mechanical engineering at KJ Somaiya College, and joining her father’s manufacturing business was a reality she had built in her head. Ten days before her fifth semester examination, Haveliwala faced a severe bout of fever and weakness. She attributed it to exhaustion and lack of sleep. “At that age, exams are life and death situations. That 90 per cent means everything,” she says. Within hours, the fever shot to 104 degrees and her head hurt. “I have no memory of what happened that night. Mom said I went cold and blank, and was frothing at the mouth.”
After a week in the hospital (three days in the ICU), she was back home and anxious about academics. But her neurologist advised a year-long sabbatical. “Eventually, I had to quit. I was on high medication to battle the daily seizures, and was experiencing fatigue and drowsiness. For a whole year, I did little, aside from sleeping,” she remembers.
While at the hospital, Haveliwala realised that she was sensitive to sound. The closing of a door, a bed creaking, or a loud hello would trigger an episode instantly. Honking of cars in a traffic jam, even lilting music at a restaurant would mean hell. Returning to her aerobic class, going out to a movie or clubbing with friends, was obviously, out of the question. “While my friends were learning how to drive, I surrendered my licence and was escorted around by my mother. It affected me psychologically,” she admits.
Together with medication, the family tried every alternative therapy available to them (her bedroom is designed according to vastu, and the windows are sound proof). She oscillated between religious rituals to wear off the evil eye and consultations with neurologists in America. But nothing worked to contain what Haveliwala was told is “an unusual firing in the brain”. In 2007, Dr Jayanti Mani suggested a temporal lobe surgery at the Sree Chitra Institute in Trivandrum, Kerala, where she met patients from sundry cultures, ages and financial backgrounds, all bound by a common thread epilepsy. “It was relieving to know I was not alone. There were millions battling the same thing I was,” she says.
But rebuilding her life wasn’t easy. She had to stop focussing on the ‘whys’ and consider ‘how’. “There’s no magic pill for it, you know. It’s how you hold the map. You have to find your own way,” she says. On Dr Mani’s advice, Haveliwala met counsellor and head of the Bombay Chapter of the Indian Epilepsy Association (IEA), Carol D’Souza. Here, she turned volunteer, sprucing up a dull office in vibrant colours, teaching English, math and logic to younger students and organising support group meetings.
The following year, despite uncontrolled seizures, Haveliwala turned entrepreneur. She transformed her father’s spare warehouse in Fort into a 15-seater rent-by-day workspace that she called SoBo Connect. Meanwhile, she wrapped up a course in webdesign, and is currently learning Arabic calligraphy. “Doctors had told my parents, ‘she won’t study further’. But I am determined to acquire a postgraduate degree in Commerce by May next year. It’s something my dad loves to boast about to his friends,” she smiles.
Spreading the word
Offering a support system to others like her is part of Haveliwala’s strategy to cope with her struggle. It’s not uncommon to see her attending a rural epilepsy camp conducted by IEA (Bombay) to counsel patients and their family, who are often in denial, equip them with information and attempt to rid the disorder of stigma. “People are shy to talk about it. It’s as if they did something wrong. And then there are the classic bhoot preth stories. No one believes it is a genuine disease,” she rues. “And, I’m not talking about rural patients. These are residents of tony neighbourhoods like Breach Candy.”
Haveliwala is still on medication, the side effects of which are a reality, she admits, adding, “But I’m happy I’ve learnt to visualise the world my way. I refuse to stop doing what I do.”
EPILEPSY AND INDIA
According to findings of a 2012 study by the University of Oxford published in British medical journal, The Lancet, nearly 95 per cent epileptic patients in India don’t receive any treatment. Anti-epileptic drugs aren’t available to 50 per cent patients in the public sector and less than 40 per cent receive generic medicines instead of specific branded ones. Doctors say that if the seizures have been brought on by an infection like tuberculosis, the disorder is curable. In most other cases, it’s possible to successfully contain the seizures.
The reason why low-income countries like India are at higher risk, say experts, is because typical risk factors (including head trauma, poor neonatal care, and infections such as neurocysticercosis; pork tapeworm and onchocerciasis; river blindness) are more prevalent here. Neurocysticercosis is responsible for about 30 per cent of seizure disorders in India.
» Be calm. Help the patient lie down. Loosen tight clothing, remove glasses/watch/shoes.
» Place a rolled-up towel or pillow under his/her head.
» Do not allow people to gather around him/her. Allow free air circulation and open all windows. Don’t resort to traditional methods like making the patient smell a shoe; it blocks air flow through the nasal passage. Also, do not force a spoon/other objects between his/her tightly held teeth.
» Do not forcibly hold the limbs tightly to prevent them from convulsing, but do ensure that they don’t thrash against objects that will hurt him/her.
» Turn him/her to the side to drain saliva from the mouth if frothing.
» After the attack, if the patient is sleepy, let him/her rest. Don’t offer anything to eat or drink till s/he is fully conscious.
» There may be times that convulsions may not stop for several minutes, or come repetitively for many hours. This condition will need immediate medical attention and hospitalisation. Occasionally, such a situation, known as status epilepticus, can lead to respiratory arrest resulting in lack of oxygen to the brain and permanent brain damage or death.
» With acute crisis over, the patient will need further investigations by way of a brain scan (CT/MRI ), EEG. – Dr Keki Turel, neurosurgeon