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Purple Day – Understanding Epilepsy
By Jay Desai
The World Health Organization statistics that address the lack of care for those with epilepsy are disturbing. Of the 50 million sufferers of epilepsy worldwide, about 85% live in the developing world. About 60 to 90% of these patients in the developing world receive no care due either to stigma or lack of resources. If properly treated, 70 to 80% of those with epilepsy can lead normal lives. Thus, anywhere from 18 to 30 million patients worldwide, possibly remain untreated and suffer when they could have enjoyed a happier and more productive life.
Several advocacy organizations around the world have joined hands in recent years to raise awareness of epilepsy and decrease stigma associated with it by designating and celebrating March 26 as the ‘Purple Day’. Everyone is encouraged to dress up in purple clothes and participate in or host events to talk about epilepsy. Last week, purple day was celebrated around the world. It was observed in India as well but by a very small number of people. In fact, it passed by with not more than just a whimper. This needs to change.
Let us examine a few facts about the human brain, seizures and epilepsy.
The human brain has billions of cells called neurons. These produce beautiful, characteristic and uniform rhythms when electrodes are placed on the head. These rhythms evolve as a child grows to become an adult and subsequently in old age. They also vary according to the state of wakefulness. When abnormal electrical activity develops in a number of brain cells and evolves, it leads to a seizure, colloquially often referred to as a ‘fit’. The most obvious manifestations of seizures include stiffening, jerking or shaking; associated with staring or up rolling of eyes; foaming at mouth; incontinence; and loss of consciousness. Some seizures lead to just loss of awareness of surroundings or confusion. Seizures may also be completely silent or very subtle with just rhythmic twitching of the face, fingers or toes.
Seizures, that occur with fever, immediately after head trauma, due to blood electrolyte disturbances or during anesthesia withdrawal, may be provoked by these specific circumstances and may not lead to a diagnosis of epilepsy. Epilepsy is generally defined as two or more seizures that are unprovoked. Epilepsy may be due to old brain injuries or infections; associated with developmental malformations of the brain; secondary to tumors or strokes; due to various genetic predispositions; or due to unknown reasons.
Until recently, we had few medications available for treatment of epilepsy, including phenobarbital, phenytoin, carbamazepine and valproic acid. However, many newer drugs have been developed and made available for use for epilepsy in last two decades. Some examples of these include levetiracetam, lamotrigine, topiramte, zonisamide, oxcarbazepine, lacosamide and rufinamide. Thankfully, many with epilepsy have seizures that are easily controlled when an appropriate medication is prescribed. A few unfortunate ones go on to develop intractability, which means that they fail to achieve good seizure control in spite of use of two or more correct agents. Other options for treatment are available such as special diet, use of implanted stimulators and epilepsy surgery and often are effective when used prudently.
Epilepsy is often a chronic condition, lasting for years or a lifetime. With advances in treatment, there is hope that we can control or even cure a vast majority of sufferers in the coming years. We need to raise awareness, end stigmatization and improve access to care so that these goals can be achieved.
[Jay Desai is a neurologist at Children’s Hospital Los Angeles and a Care & Cure faculty of the Epilepsy Foundation of Greater Los Angeles]