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Lack of knowledge about epilepsy resulting in social stigma, says specialist

IANS Feb 12, 2024

International Epilepsy Day is celebrated every year on the second Monday of February to promote awareness of epilepsy around the world. This year, the International Epilepsy Day will focus on the journey of people living with epilepsy who faced challenges in their lives.

Epilepsy affects almost every aspect of the life of the person diagnosed with the condition.

For many people living with epilepsy, the stigma attached to the condition can be more difficult to deal with than the disease itself. The lack of knowledge about epilepsy translates into social stigma and exclusion and leads to the discrimination of people with epilepsy at work, at school or in the community.

Stigma can cause serious harm to the physical, mental, and social well-being of a person with epilepsy, says an epilepsy specialist.

According to Sita Jayalakshmi, Consultant Neurologist and Epilepsy Specialist, Krishna Institute of Medical Sciences (KIMS), epilepsy is a neurological disorder in which nerve cell activity in the brain becomes disrupted, causing seizures or periods of unusual behaviour, sensations and sometimes loss of consciousness.

"Epilepsy is a treatable brain disease. Epilepsy can develop at any age. However, it is diagnosed most before the age of 20 and after the age of 60. A single seizure doesn't mean you have epilepsy. At least two unprovoked seizures are generally required for an epilepsy diagnosis. Even mild seizures may require treatment because they can be dangerous during activities such as driving or swimming. Treatment with medications or sometimes surgery can control seizures for about 80 per cent of people with epilepsy. Some children with epilepsy may also outgrow their condition with age," she said.

The most important causes of epilepsy include perinatal brain injury, infections, traumatic brain injury, and stroke. All of these conditions are preventable.

However, epilepsy has no identifiable cause in about 30 per cent of those with the condition. On the other, the condition may be traced to various factors like genetic influence, brain tumours, and developmental disorders of the brain.

Speaking about the risk factors for epilepsy, she said certain factors may increase the risk of epilepsy.

"The onset of epilepsy is most common during early childhood and after age 60, but the condition can occur at any age. If you have a family history of epilepsy, you may be at an increased risk of developing a seizure disorder."

Head injuries are responsible for some cases of epilepsy. One can reduce risk by wearing a seat belt while riding in a car and by wearing a helmet while bicycling, skiing, riding a motorcycle or engaging in other activities with a high risk of head injury.

Stroke and other blood vessel (vascular) diseases can lead to brain damage that may trigger epilepsy. The risk of these diseases can be reduced by steps like limiting alcohol intake and avoiding cigarettes, eating a healthy diet, and exercising regularly.

High fevers in childhood can sometimes be associated with seizures. Children who have seizures due to high fevers generally won't develop epilepsy, although the risk is higher if they have a long seizure, other nervous system conditions or a family history of epilepsy.

The doctor mentioned that flickering lights, lack of sleep, tiredness, stress, excitement, missed meals, high temperature, menstrual periods, and missed or late medication can trigger an epileptic seizure.

On how to identify the symptoms of epilepsy, the epilepsy specialist explained that temporary confusion, a staring spell, uncontrollable jerking movements of the arms and legs, loss of consciousness or awareness and psychic symptoms can occur during seizures.

One must see a doctor if the seizure lasts more than five minutes, if breathing or consciousness doesn't return after the seizure stops, a second seizure follows immediately, if one has a high fever, is pregnant or has injured himself or herself during the seizure. If you experience a seizure for the first time, seek medical advice, she said.

Having a seizure at certain times can lead to circumstances that are dangerous to the person with the condition or others.

If you fall during a seizure, you can injure your head or break a bone. If you have epilepsy, you're 15 to 19 times more likely to drown while swimming or bathing than the rest of the population because of the possibility of having a seizure while in the water. A seizure that causes either loss of awareness or control can be dangerous if you're driving a car or operating other equipment.

People with epilepsy are more likely to have psychological problems, especially depression, anxiety and, in extreme cases, suicide. Problems may be a result of difficulties dealing with the condition itself as well as medication side effects.

Epilepsy is diagnosed with a good description of the event and a home video recording of the event on a mobile phone. The tests usually performed are an EEG test and an MRI of the brain.

Seizures during pregnancy may pose dangers to both mother and baby, and certain anti-seizure medications increase the risk of birth defects.

“If you have epilepsy and you're considering becoming pregnant, talk to your doctor as you plan your pregnancy. Most women with epilepsy can become pregnant and have a healthy baby. You'll need to be carefully monitored throughout pregnancy, and medications may need to be adjusted. It's very important that you work with your doctor to plan your pregnancy,” she explained.

She also underlined the need to create awareness among people on dos and don’ts during a seizure. Medical aid is usually not required except in case of the person being in water and drowning. The duration of the seizure is usually not more than two minutes after which the person enters a state of deep sleep.

Most people with epilepsy can become seizure-free by taking one anti-seizure medication. Others may be able to decrease the frequency and intensity of their seizures by taking a combination of medications.

More than half of those with epilepsy who aren't experiencing epilepsy symptoms may eventually not require medications and live a seizure-free life, after two or more years without seizures.

Surgery may help 30 per cent of the people with epilepsy whose seizures are not controlled well despite medical treatment.

Some of these candidates may be helped by having epilepsy surgery, which involves removing the abnormal or damaged part of the brain without affecting the functions of the normal functioning brain. This is major brain surgery and is performed by specialised centres.

Vagus nerve stimulation is a relatively new type of treatment for epilepsy. It aims to reduce the number, length and severity of seizures a person has. It is a treatment for epilepsy where a small generator is implanted under the skin below the left collarbone.

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