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‘My life is at risk’: Living with epilepsy in Malawi

Saulos Kamphulusa struggles to find jobs because of his medical condition[ Photo credit: Kenneth Jali]

For Saulos Kamphulusa, the sheer thought of knowing that he might likely go into the next fainting episode at any moment in time is a constant source of anxiety.

“My life is at risk mostly because I do not have the support,” Kamphulusa told MBC.

The 73-year-old of Nsanganiza Village, Traditional Authority Somba in Blantyre, suffers from epilepsy, a condition he has had since he was a child. Today, seizures have become part of his daily life.

“Epilepsy drugs require eating before we take them,” he said. “In most cases, a day goes without having anything.”

Kamphulusa struggles to make ends meet.  He has no reliable source of income and survives by doing piece work.   But for a person in his condition, menial jobs are hard to come by as many are reluctant to engage him, fearing the fainting spells.

Globally, an estimated 5 million people are diagnosed with epilepsy each year, according to the World Health Organization. The National Epilepsy Association of Malawi reports that there are about 10,000 people with the disease in the country.

For Kamphulusa, medication adherence is not just a matter of choice but a lifeline. He walks for about two hours from his village to Mpemba Health Centre to collect his weekly dosage.

“My life is dependent on drugs. The moment I stop taking them [drugs], immediately warning signs show,” said Kamphulasa somberly. “In some cases, I am fortunate to see the signs go away without developing into fits.”

People with epilepsy are prone to seizures at any given time and need someone to look after them in the event they have fits.  But this is not the case with Kamphulusa.

The widower lives alone and has no family member to assist him when he has fits.  His three children are all grown-ups and live with their families away from the village.

Lack of employment

Epilepsy not only disrupted Kamphulusa’s education, forcing him to drop out in Standard 8 but it also hindered his employment opportunities. Despite working as a shopkeeper for two years, he faced dismissal twice due to his medical condition.

“I looked for employment elsewhere but on two occasions, I was made to leave because of the same – my condition,” he said.

His last stint at Kamuzu International Airport ended after four years when he was let go for the same reason.

In Nsanganiza Village in Blantyre is Felliat Luscious. The mother of two and three grandchildren is also epileptic.   Just like Kamphulusa, she too survives on menial jobs.

“I try as much as I can to find piece works so that I can buy the medicine,” she said. “I go to Mpemba Health Centre to get the drugs where sometimes I am referred to Queen Elizabeth Central Hospital where we are mostly turned back without medication. With financial challenges, we end up staying without medication for days.”

Felliat Luscious is forced to stay days at a time without epileptic drugs due to financial constraints [Photo credit: Kenneth Jali]
Kampulusa and Luscious are not alone in this predicament. According to Kampulusa who chairs a local support group of people with epilepsy, about 90 people are suffering from the disease in the area.

“We were around 90 people but now only 50 of us meet. Lack of medication at this hospital [Mpemba Health Centre] has contributed to the reduction in number,” said Kamphulusa. “People feel discouraged when they find there is no medication at the facility.”

People with epilepsy often complain about the lack of conventional anti-epileptic drugs in public health facilities. Most say these drugs, which control seizures, are not often available and they are told to go and buy at private pharmacies where they buy a week’s dosage at more than K3,500 which is above the reach of many.

“In an event that we have managed to raise money, it is mostly for a week-long dosage,” said Luscious. “I spend about K10,000 for a month-long dosage but I hardly find such a huge sum of money.”

However, a member of the epilepsy outreach team stationed at the Gateway Clinic in Blantyre, Susan Chawilima, who acknowledged the shortcomings, said the facility ensures that alternative anti-epileptic drugs are always available in case the prescribed ones have run out.

“There are shortages of some essential drugs but we try our best,” said Chawilima.

Action Amos, outgoing regional coordinator for The International Bureau of Epilepsy said currently the county does not have a robust system that fully supports people with epilepsy.

He however pointed out that the disability protocol that the country signed is a start.

“This protocol is the highest instrument in the region that recognizes epilepsy as a disability. It provides provisions for social support that governments should provide,” said Amos.

He looks to examples set by African countries like Kenya and Uganda, where comprehensive social support structures have begun to take root.

“Hopefully we are going to get there, but we have a long way to go,” noted Amos.

For Kamphulusa, life is about living. Despite the challenges, he lives one day at a time. Kamphulusa’s wish is for society to embrace people with epilepsy and treat them with the dignity that they deserve as human beings.

 

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