Epilepsy: More awareness needed

Epilepsy is a brain disorder where a person has repeated seizures (convulsions) over time. Seizures are episodes of disturbed brain activity that cause changes in attention or behaviour. The brain uses electro-chemical energy and any disruption in the electrical process in the brain can cause abnormal activity. This leads to epilepsy where nerve cells in the brain misfires and create abnormal electrical activity. People suffering from epilepsy have seizures that happen repeatedly.

The word epilepsy has been coined from a Greek term which means ‘to possess, seize or hold.’ Famous people who suffered from the disease were Julius Caesar, Russian Czar Peter the Great, and Pope Pius IX, to name a few. People suffering from the disease are viewed with fear, suspicion and are subjected to social stigmas.

Facts and figures

According to the Indian Epilepsy Association, around 10 per cent of the population in India suffers from epilepsy, which is a significant number as against an average population of one billion. However, this disease is not considered as major a health threat as HIV or tuberculosis. Studies conducted across India among 30 neurologists/neurosurgeons, spread across these six cities—Delhi, Mumbai, Bangalore, Chennai, Kolkata and Hyderabad, indicate that the problem varies from 9/1000 in Bangalore, 5/1000 in Mumbai, 3/1000 in Kolkata and 4/1000 in Delhi. As per World Health Organisation figures, 70-80 per cent patients do not receive treatment.

Epilepsy is a lifelong condition for many people. There is a very low risk of sudden death with epilepsy. However, serious injury can occur if a seizure occurs during driving or when operating equipment.

Causes

According to a neurologist in Delhi, it is not possible to know the exact cause of epilepsy. A neurologist from Hyderabad admits that 75 per cent of the time, doctors do not know the exact cause of the tumour, it could be anything from alcohol withdrawal to a worm infection”.

A neurologist from Mumbai commented, “The most common type is idiopathic epilepsy; six out of 10 people suffer from this disorder. However, it has been noted that the most common type of epilepsy was caused by Hypoxic-Ischemtic Encephalopathy, parasitic infection, tumours/lesions, or any kind of head injury (both physical and emotional).

Although scientifically, doctors cannot say that there is any particular age group which is more prone to epilepsy, however, they have seen a pattern where younger children represent a high percentage of the epileptic population. Most doctors believe that children are more easily susceptible to parasitic infections of the central nervous system and genetic mutation, which usually happen during the foetal stage.

According to another neurologist in Delhi, “During the creation of the brain, neurons are formed around fluid filled cavities called ventricles located at the centre of the brain. As a baby’s brain develops, these genetically programmed neurons travel out in different directions to take over their respective tasks such as speech, motor functions, reasoning etc. When a certain band of neurons fails to travel to its targeted destination, it causes hindrance in the normal electrical circuitry of the brain, producing an abnormal current pattern causing seizures.”

It has been noted that in 70-80 per cent cases, the seizures could be controlled with the help of medication. In the remaining 20 per cent, the most common treatment protocol used is surgery. Out of this 20 per cent, which are unresponsive to medication it was found that a ketogenic diet (a high-fat, adequate-protein, low-carbohydrate diet) was useful. A ketogenic diet helps to force neurons to switch from their customary fuel of glucose to a type of fat by-product called a ketone body. General practitioners have a vital role to play in the treatment of this malady which continues to be shackled in myths and misconceptions, according to a majority of the neurologists interviewed. Stressing the importance of general practitioners, they say that they are also better placed to change the attitudes of families and treat patients. Experts have repeatedly emphasised that it is not contagious and people with epilepsy are not crazy.

A consulting neurosurgeon from Delhi explained that seizures and epilepsy are not synonymous. He said, “A single seizure can occur in up to eight per cent of the population during ones lifetime. Only seizures that are recurrent and not caused by any particular stimulus like high fever, alcohol withdrawal or even low blood sugar can be termed as epilepsy.”

Myths

1. Epilepsy occurs due to incarceration with evil spirits
2. Patients are possessed by God, they should be worshipped
3. Having a person in the family with epilepsy is a stigma, so this fact should be concealed
4. Children with epilepsy are dull and cannot learn, so they should not be sent to school.
5. Women with epilepsy can never have children, so they should not get married.
6. A seizure can be terminated by putting a key in the patient’s hand or by making the patient smell onions or a dirty shoe.

Role of pharma companies

Neurologists and neurosurgeons across India believes that with more active participation from pharma companies and the government both, would help reduce the number of patients who do not get treatment. For example – pharma companies could keep flyers in the offices of general practitioners to ensure mass communication, as well as materials for the doctors in order to ensure that the cases are caught at the earliest stage possible, suggests a neurologist in Hyderabad.

A Bangalore-based neurosurgeon advocated, “All medication should come with pamphlets which give facts about the disease and give importance to compliance and regular checkups. If pharma companies are unable to counsel patients they should atleast guide them in the right direction, say, for example, inform them about Indian Epilepsy Association (IEA).” IEA looks after the non-medical and social aspects of epilepsy while the Indian Epilepsy Society (IES) is responsible for the medical aspects. Other common popular initiatives are to conduct free camps not only for the patients but for their family members in order to ensure that they too get to know about the disease. This should not be limited only to urban India, but it needs to reach the grassroots. Similarly, the government needs to follow its own footsteps, undertake campaigns similar to those for tuberculosis and HIV.

According to a neurologist in Delhi, “Although the first line drugs are affordable, the second line drugs are expensive which leads to drop in compliance. Even getting a test done is expensive for some patients where they are unable to get the proper treatment. The media should play an important role in creating awareness about epilepsy which will help patients become less hesitant and get cured.

Disclaimer

Statements and opinions expressed in this article are those of doctors across urban cities(Delhi, Mumbai, Hyderabad, Chennai, Kolkata, Bangalore). While every care has been taken in the compilation of this information, the authors will not be responsible for any claim, loss, damage or inconvenience caused as a result of any information within these pages.