Epilepsy Burden in India

Epilepsy is a disease of the brain characterized by recurrent seizures, which are brief episodes of involuntary movement that may involve a part of the body (partial) or the entire body (generalized). The seizures are sometimes accompanied by loss of consciousness and control of bowel or bladder function.

Seizure episodes are a result of excessive electrical discharges in a group of brain cells and can vary from the briefest lapses of attention or muscle jerks to severe and prolonged convulsions. Seizures can also vary in frequency, from less than 1 per year to several per day.

Characteristics of seizures vary and depend on where the disturbance first starts in the brain, and how far it spreads. Temporary symptoms occur, such as loss of awareness or consciousness and sensation (including vision, hearing and taste), lack in coordination or other cognitive functions.

People with seizures tend to have more physical problems (such as fractures and bruising from injuries related to seizures), as well as higher rates of psychological conditions, including anxiety and depression. Similarly, the risk of premature death in people with epilepsy is up to 3 times higher than the general population[1].

With 50 million people worldwide affected by epilepsy, it is one of the most common neurological diseases globally.Contributing close to one-sixth of the global burden, nearly 12 million people suffer from epilepsy in India. Thischronic non-communicable disorder of the brain affects people of all ages and is known to be more prevalent among rural populations (1.9%) compared to urban populations (0.6%) with nearly 80% of people with epilepsy (PWE) living in low-and middle-income countries[2].

How to better manage the disease

According to Dr. J. Karankumar,AssociateMedical Director, Abbott “Early and accurate identification of types of seizures, epilepsy and any associated conditions can help get the patient the right kind of medication.”

He further opines, “Education on the disease is crucial pertaining to myths and misconceptions prevalent in most of our communities about the medical nature of epilepsy amongst patients and their families, its characteristics, causes and prognosis.”

Gender comparison and Women with Epilepsy (WWE)

There is broad agreement between studies that females have a marginally lower incidence of epilepsy and unprovoked seizures than males[3].

However, being a woman with epilepsy (WWE) is not the same as being a man with epilepsy. Epilepsy affects sexual development, menstrual cycle, aspects of contraception, fertility, and reproduction.Oestrogen is known to increase the risk of seizures, while progesterone has an inhibitory effect.

It is estimated that there are about 2.73 million WWE in India and 52% of them are in the reproductive (15-49 years) age group[4]. In a study conducted in India, more than half of WWE concealed their history of epilepsy prior to their wedding, fearing social stigma and breakdown of the marriage negotiations. Studies also found that 52% of people considered epilepsy as a hereditary disorder and 49% of people believed that an epileptic patient should not get married. In addition, 60% people also professed a belief that a person with epilepsy will not have normal sexual relations.

Management of epilepsy in women requires not only knowledge of epilepsy, but also recognition of the various roles and priorities women have in their lives (education, career development, child rearing, the role as carer within the extended family), and attention to gender-specific issues and their impact on patients’ wellbeing throughout life.

Social impacts: The Stigma, Myths & Taboo

Epilepsy has significant economic implications in terms of health care needs, premature death and lost work productivity.People living with epilepsy can be targets of prejudice. This can discourage people from seeking treatment for symptoms, so as to avoid becoming identified with the disorder.Although the social effects vary from country to country, the discrimination and social stigma that surround epilepsy worldwide are often more difficult to overcome than the seizures themselves.

According to theKAP study conducted in Indore published inGlobal Journal for Research Analysis, 75% of people thought that epilepsy created hindrance in normal life of patients.

Various communities in India continue to perpetuate myths about epilepsy. Around 15% of the population considered epilepsy as a contagious disease whereas 64%of people believed that epilepsy is a mental illness.[5]Epilepsy is sometimesthought of as a punishment of evil deeds or the breaking of certain taboos.The strange behaviours caused by some forms of epilepsy have led to a common rural belief that epilepsy is due to “possession by spirits”. Thus, 20% of people stated that holy treatment, such as tantric treatment, is ‘good for epilepsy’. A similar proportion said priests can treat epilepsy better. What may fuel these statement is the belief, held by 20%, that epilepsy is a result of one’s previous life’s sins.[6]

Even in urban areas, there are several misconceptions about epilepsy which hinder patients from either getting effective treatment or appropriate support from their families. Stigma related to epilepsy not only influences the treatment of disease, but also affects education, employment, marriage, child-bearing, discrimination at school, jobs and family. As high as 60% of people believeda person with epilepsy should not work and 32% said that epileptic patients should not study. On a related note, 25% said they would object if their kids were to play or study with an epileptic child.[7]

Such myths also have repercussions for first response practices. 50% stated they would aid a person with an epileptic fit by splashing water on his face, while 20% said they would place a shoe or onion on the nose of such a patient.

Diagnosis

Knowing if a person is having a seizure and diagnosing the type of seizure or epilepsy syndrome can be difficult. There are many other disorders that can cause changes in behaviour and can be confused with epilepsy. Since the treatment of seizures depends on an accurate diagnosis, making sure that a person has epilepsy, and knowing what kind is a critical first step.What happens during a seizure is one of the most important pieces of information. Since seizures rarely happen in a doctor’s office, the information given to the doctor and other health care professionals by you or other witnesses is extremely important.

To diagnose an epileptic’s condition, the doctor will review the patient’s symptoms and medical history before ordering several tests to diagnose epilepsy and determine the cause of seizures. A few of the tests include:

• A neurological exam to test behaviour, motor abilities, mental function and other areas
• Blood tests to check for signs of infections, genetic conditions or other conditions that may be associated with seizures
• Electroencephalogram (EEG) which is the most common test used to diagnose epilepsy. In this test, doctors attach electrodes to the patient’s scalp allowing the electrodes to record the electrical activity of your brain.If the patient is epileptic, it’s common to have changes in his/her normal pattern of brain waves, even without a seizure. The doctor may monitor the patient on video while conducting an EEG, to record any seizures you experience. Recording the seizures usually help the doctor with a more concrete diagnosis

Accurate diagnosis of the patient’s seizure type and where seizures begin gives the epileptic the best chance for finding an effective treatment.Moreover, timely diagnosis and correct treatment options can help 70% patients lead a seizure free life.[8] However, such treatment does not reach the vast majority of patients. The treatment gap in India ranges anywhere between 22% in some of the metros to 95% in the disadvantaged segments and rural populations.