Demystifying epilepsy

Two-year-old Stella Chidothi from Chileka in Malawi’s commercial city, Blantyre, lost consciousness while playing in June. Her body remained still but some foam came out of her mouth.

Afraid and confused, Stella’s mother, Elizabeth, sought help from the neighbours. Some feared it could be epilepsy; others thought of exhaustion or malaria.

“When we did all that we could like applying a cold towel and she failed to regain her consciousness, I rushed her to Chileka Clinic. We spent a night there and early in the morning, we were rushed to Queen Elizabeth Central Hospital where she regained consciousness.

“It was confirmed that she had epilepsy and although I feared that my daughter will never have a normal life, I was assured that she will get better,” said the mother.

For two months now, Stella has been in hospital. She takes about 10 small tablets in the morning and another 10 in the evening. She has sleepless days and nights because sudden fits and non-stop hic-cups keep her awake. But, in the face of it all, there is hope.

According to Stella’s grandmother, Lita Male, who is helping take care of the little girl, she was least surprised when she heard of the girl’s condition. This is because when Stella’s mother was four years old, she too had epilepsy.

“For a year, the mother also had epilepsy. She fell about once or twice and when she went to the hospital, she was given medication. She has not had any fits since then. So, we are hopeful. My daughter leads a normal life. Of course, sometimes she is slow in thinking but that is something minor. Here she is raising her own daughter,” said Male.

There is a chance that Stella will someday tell her children about this disease like her mother is doing because she sought medical care.

But some epileptic people end up with brain disorders. This is because lack of knowledge of the disease has associated it with several myths that have led people to seek help from traditional healers.

Some people consider it a demonic disease because its victims have convulsions as if they were possessed. But, according to experts, epilepsy is a brain disorder that is caused by excess electrical discharges in the head.

Some of the myths associated with epilepsy include the belief that when one comes into contact with an epileptic’s saliva, one catches the disease. This has led to stigma and discrimination of the sick.

Paediatric neurologist Dr Macpherson Mallewa says epilepsy is one non-communicable disease that needs to be discussed at length. This is because it is the most common serious brain disorder in every country.

According to Mallewa, Malawi has a prevalence rate of three percent. However, he says this is an under estimate because most people have recognised epilepsy with body jerks when there are several types of the disease.

“There are different types of epilepsy. Some people will experience the generalised body jerking, while others will only have some parts jerking. Then there are those who experience some sort of absence, they just go blank; then there is what we call tonic seizure when the whole body suddenly goes stiff and finally the atonic seizure which is a sudden loss of tone.

“For most patients, there is no known cause, perhaps some genetic predisposition but for others it is from infections in the womb, cerebral malaria, pork worms or from meningitis. But it could also be from head injuries, birth trauma or as a result of brain tumours. One thing for certain is that anyone can develop epilepsy. But the good news is 70 to 80 percent of epileptic people could lead normal lives,” said Mallewa.

Apart from myths associated with the disease, epilepsy faces several other challenges in the country, including lack of medication and failure by medical staff to recognise the type of epilepsy they are dealing with.

“There are several challenges and one of the biggest is getting people to seek medical attention. A lot of epileptic patients are led to witchdoctors. But there are also challenges in the health care system. This is why there is an epilepsy association that is going to be formed to raise awareness to people as well as look into all the other challenges,” said Mallewa.

Malawi will tomorrow commemorate the National Day of Epilepsy under the theme ‘Taking Epilepsy Out of the Shadows: Stop Stigma and Discrimination’. 

According to programme manager for non-communicable diseases and mental health in the Ministry of Health, Beatrice Mwagomba, the day has been set aside to create the much needed awareness of the disease and let people know that epileptic people can lead a normal life.

“Epileptic people can get married, have children, work and go to school just like everyone else. We want to deal away with the stigma. People have for so long looked at epileptics as crazy people, but they are not. With proper care and medication they can lead normal lives.

“As a ministry, we have developed draft guidelines that will be spread in all health centres to allow epileptic people to get assistance before they are sent to referral hospitals. There is no need to discriminate,” says Mwagomba.