Aruna was a slip of a girl who had just crossed menarche, with her entire life ahead of her. Bright eyes sparkled from under shy eyelashes and strands of unruly hair that refused to listen to her.
She was a spunky kid, on top of the class for the activity sessions; her studies suffered, but her teachers said it had more to do with her natural buoyancy and talkativeness than intelligence.
Her father doted on her, and never used a cross word. Her mother despaired that the girl would find things difficult when she grew up. Her skin was dusky, and though her eyes and mischievous smile gave hints of her liveliness, finding a ‘suitable match’ was going to be difficult because of the lack of appropriate skin color.
When they first brought her to the clinic, she was not at her confident best; a recent seizure – witnessed with horror and amazement by all her classmates and a very masculine and unemotional PT teacher – had dampened her spirits.
After all the tests, my conclusion was that she definitely had more than a slight chance of recurrent seizures. A recent change in Epilepsy definition and guidelines meant that even after a single seizure, one may have to start treatment based on results of tests. In the earlier days, sometimes we didn’t even do tests after the first event, not only because of the expense and the cumbersome nature of these tests, but also because something else comes attached with the diagnosis of Epilepsy: STIGMA.
Every child who gets this label feels stigmatized; nay, the entire family feels that way. For girls it puts a heavy pressure on the parents in regard to marriage. Facts are hidden, the truth never revealed. A few were bold enough to want to change the social mores; but when their daughters and sisters remained unmarried, they returned to the practice of hiding the fact.
What is it about epilepsy and fits that people feel stigmatized?
For one thing, in the olden days, epilepsy and fits were believed to be due to possession by spirits. Epileptics were mostly brain – damaged people, some of them of low intelligence; this led to the false belief that ALL epileptics have low intelligence, and that the fits in some way CAUSE the low intelligence.
Epilepsy can run in families, and the fear that a woman can transmit it to her offspring is another BIG reason why ‘Normal’ men don’t want to marry epileptic women.
Aruna, spirited girl that she is, questioned this: “What if a man has epilepsy? He can’t pass it on to his children?”
I was thrilled to hear this intelligent question from such a small girl. “Bravo, Aruna!” I said, “You are a strong person and will definitely do something great in your life! Yes, a man can pass his epilepsy to his offspring, too, just as a woman can. Most epilepsy genes are in the non – sex genes, so there is no reason to persecute women only. But the fact is, even men are persecuted for having epilepsy, which is equally bad.”
I then went ahead to explain in greater details about genetics in epilepsy. “All forms of epilepsy are NOT genetically transmitted, or have complex inheritance, so an epileptic may have offspring without epilepsy. Sometimes grandchildren may manifest the problem, so you can have skip generations as well.”
“But one mistake – and this is a BIG one – is to lump ALL epilepsies as a single entity and then treat ALL epileptics in the same way. Epilepsy is a label we use for people who have recurrent fits; but it is not due to one disease.”
“Why does a person get fits, doc?” Aruna’s concerned father wanted to know.
“Fits are due to abnormal electrical discharge in the brain,” I replied. “Usually the person with epilepsy has an abnormal area in the brain which is generating an abnormal electrical current; this current then spreads through the brain leading to attacks called seizures or fits.”
A look of understanding dawned on the entire family. “But why does the brain have such an area? And can’t we solve the problem by removing that area?” Aruna’s father struck me as someone who loves action and is very bold.
“Well, sir,” I replied, “To answer the first question: epilepsy is the common term for many diseases. The mechanism by which a disease produces epilepsy is usually unique. For example, a brain tumor can produce fits, and so can injury to the head. But the two situations cause this condition in slightly different ways; but both of them lead to the development of an ‘abnormal electrical circuit’ within the brain, which produces the seizures.”
“Now I am much clearer, doctor.” Aruna’s father said gratefully. Then his brow creased. “But doctor, Aruna neither has a brain tumor nor has she suffered injury to the head; then what is the cause of her fits?”
“Those were just examples,” I clarified, “Inside Aruna’s head is also a small area of abnormal circuit, but that happened for different reasons. We don’t know the reasons, actually; her brain scan is perfectly normal. But that is because the routine MRI doesn’t visualize ALL that is abnormal inside the brain.”
“Then why don’t they invent one that can,” Aruna piped up. “I mean, invent a more powerful MRI so that we will know where this abnormal thing is and then get rid of it?”
“Not so easy!” I winked at Aruna. “Even if we find an area which is causing fits, removing it is not that easy. There is the danger of damaging normal brain and causing harm when attempting to do so. But even before that, there is one more thing: just seeing something abnormal in the MRI doesn’t mean that area is the cause of your fits: for conclusive proof you need to show that the same area is also producing abnormal current. Otherwise you may end up surgically removing something – with all the risks attached to that – and then find out that the fits are arising elsewhere.”
This discussion of surgery was distressing to the ladies: both mother and daughter started shaking. Even the father was looking distinctly uncomfortable.
“We don’t like surgery, doc” her father declared.
“Yes, anything but surgery,” said the mother, suddenly speaking up for the first time.
“Don’t worry, ma’am,” I said, as gently as I could. “Surgery is the very last option. We have just identified the condition. There is a good chance – at least a 25% chance that Aruna’s fits will not recur. Even if it does recur, in all probability it will be easily controlled with medicines. The question of surgery for epilepsy does not arise unless and until the problem has become intractable.”
I shook off the feeling that I may have unnecessarily frightened the family. “The reason I mentioned all this was to give a complete picture, a better perspective.”
“Many people leave a doctor’s clinic with incomplete understanding; they then get inputs from friends, neighbors, relatives, and colleagues. Or, the mother of all things in the world – Google – provides them the ‘much – needed’ misinformation! After that, anxiety becomes far too much for anyone to handle. Or, the other side: the family starts expecting too much from the treatment. I have had people who stopped the medicines because they found that the fits came back when the drug was stopped: their doctors hadn’t warned them this could happen, so they had mistakenly hoped the medicines were going to cure them of the epilepsy. So understanding the basics about epilepsy will definitely help you.”
“I completely agree, doctor,” Aruna’s father declared. “Better to know everything than to make mistakes out of ignorance. We really appreciate the time you took to explain us all these things. Now we feel better equipped to deal with this problem.”
I say a silent prayer for Aruna, as I remember Arfa Karim, the youngest Microsoft – certified Professional, a genius in computer – programming, who died of epilepsy at the age of 16 years.Leave a reply →