Elizabeth Zainab Kargbo was a successful young woman, eight months pregnant and working in Sierra Leone’s civil service, when she had her first seizure.

Elizabeth Zainab Kargbo suffers from epileptic seizures. Suffers in Sierra Leone are often undiagnosed and unaware that their condition is treatable. Credit: Jessica McDiarmid/IPS

No one knew what it was. She lost her job and the baby, and as the attacks kept coming, most of her friends, neighbours and family stayed away.

“When I get the attack and drop down, people are so afraid of me, they run,” says Kargbo.

“They say, ‘Oh, don’t touch her, don’t touch her, it will spread.’ So sometimes when I drop down, I have damages to my face.”

Kargbo has epilepsy, a neurological condition that afflicts an estimated 60,000 to 100,000 people in this West African country of just over six million. Most are never diagnosed and only about 2,500 of them receive medical treatment. Sufferers here are often isolated, driven from their communities, and unaware that what they have is a highly treatable medical condition.

After Kargbo began experiencing seizures, her mother took her to a traditional healer. She was taken into a room and told to remove her clothes – and made to promise that she would not tell anyone what happened.

She wanted to get better, so she promised not to tell, took off her clothes and was molested.

Despite her promise, Kargbo told her mother. That was the end of traditional healers, she says with a smile.

Max Bangura, the coordinator and founder of the Epilepsy Association of Sierra Leone, has heard dozens of stories like Kargbo’s.

Seizures are often attributed to witchcraft, curses or demonic possession, says Bangura, whose association provides counselling and treatment to epilepsy patients and runs a small vocational training programme.

There is widespread belief that it is contagious, which further isolates people with epilepsy. Bangura says even those who have gone to medical centres for treatment have been referred to traditional healers because medical staff weren’t aware of the symptoms of epilepsy.

People with epilepsy are often driven from schools, jobs, homes, and subjected to traditional treatments that, he says, are “tantamount to torture” – cuts, burning, inhaling or drinking potions. One of the association’s members survived drinking two litres of kerosene. Girls and young women are subjected to sexual assault as a purported “cure,” says Bangura.

Treatment with phenobarbital, an anti-epileptic drug, costs 10,000 Leones (about two dollars) per month in Sierra Leone and is up to 70 percent effective in controlling epilepsy. But few people access it – and many cannot afford it.

“People do not come out. People do not want to be identified as having epilepsy,” says Bangura. “The stigma attached to the disease makes people not go to health centres because they don’t want anyone to know.”

The challenges of treating epilepsy in Sierra Leone are daunting. The country’s fledgling healthcare system struggles to cope with far more common — and deadly — afflictions such as malaria, diarrhoea and respiratory infections with little infrastructure and few professional health staff. It is one condition competing with many others in a system painfully short of resources.

Dr. Radcliffe Durodami Lisk, the only neurologist in a nation of about six million, runs the Epilepsy Project, which works with Bangura’s association to provide care throughout the country.

Funded by a British charity, the project runs three clinics in Freetown and one in Bo, the country’s second-largest city, which operate out of government hospitals. Workers travel to other areas of the country each month to disperse medication and provide care.

Sierra Leoneans have higher rates of epilepsy than most Western countries, due to risk factors such as meningitis, traumatic births and cerebral malaria.

Many patients cannot afford drugs, even at a cost of two dollars a month, says Lisk.

“It would be great if we could provide free treatment because most of these patients cannot work – no one will hire them,” says Lisk. “We end up giving quite a few patients free medication and trying to absorb the cost.”

But the biggest challenge, says Lisk, is convincing people to come forward and access treatment.

“They do not believe it’s a medical illness,” he says. “They don’t even think of going to see a doctor because as far as they are concerned, this is a demon or witchcraft.”

On a narrow lane behind a mosque in eastern Freetown, a handful of students lean over sewing machines under an awning that juts out from a partially finished building. The epilepsy association’s headquarters doubles as Bangura’s family home, and a vocational training centre, dubbed “The Love Institute” for about 20 people with epilepsy.

Here, people with epilepsy learn trades and are offered counselling, support and treatment. Bangura has been running the association for 11 years with funds from donations and membership contributions.

Chernor Dumbuya was carrying a basket of cooking items home from the market in Freetown, Sierra Leone, for his mother the first time he had a seizure. Thirteen at the time, Dumbuya dropped his load and fell to the ground with froth coming from his mouth. Everyone ran away.

The attacks kept coming, and no one knew what was causing them. Neighbours and friends were afraid of him.

“They all went far away,” says Dumbuya, who is now 28. “They all stayed away.”

Since starting treatment, he has had almost no attacks, and was the first graduate of the association’s three-year training programme, finishing in 2007 and carrying on to work as a tailor.

After years of living in isolation, Kargbo began taking classes here a year ago and the association connected her with treatment. She gets the money to pay for her medication from her church.

“If you expose (your illness), you get help.”

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By Abdul Samba Brima and Jessica McDiarmid
FREETOWN, Jun 6 2011 (IPS)

Samuel Weekes remembers when the hills stretching out beyond the heart of Freetown were green.

Houses are climbing up Freetown's surrounding hillsides as government fails to enforce laws to protect soil stability in Sierra Leone's largest city. Credit: Abdul Samba Brima and Jessica McDiarmid

“Fifteen, 20 years ago, those hills were covered in trees. Today, most those trees have been cut down, mostly for housing purposes,” says Weekes, the director of population studies at Fourah Bay College in Sierra Leone’s capital city.

Freetown is wedged between the Atlantic Ocean and steep hills leading inland. On the hills around the city, homes cling to steep slopes, some held together by “packings” – as the locals refer to the makeshift terracing. There are no roads here, only steep paths held together with stones. In some areas, residents have to literally scramble up to the next level of terrace.

In a community near the university, two infants were killed when a boulder came loose from the slope above and crashed through their house last year. But resident Ibrahim Conteh says they don’t know of any building codes they should follow to erect their homes safely.

“Heavy rain can come and just pass through the house and cause accidents to happen,” he says, standing near a three-metre drop to the roof of a house below. “We try our best to make sure we put in place things to try make sure no bad things happen.”

“People find it difficult to find a place to live, so they come here.”

When they want to build, says Thaimu Turay, they clear off the trees, break the stone and make packings. “No one tells us how or where to put our structures,” he says. Weekes says government needs to plan carefully and enforce existing regulations limiting the amount of building that can happen on hillsides.

“How much of that is being done, I don’t know,” he says. “Government has to be very proactive to set limits beyond which they should not go and those limits have to be closely monitored.”

Yet as the city’s population balloons to well over a million people – exact figures are not known – space is becoming ever harder to find. More and more people are clearing to make way for homes – some grand mansions, others no more than a few sheets of tin pieced together – raising fears of landslides and other calamities as development spreads unchecked up the mountainsides. Those fears are fresh on people’s minds now as the rainy season’s daily deluges begin.

Weekes attributes the burgeoning crisis to unbridled population growth and rural-urban migration, as thousands flock to the city in hopes of better opportunities. Part of that is due to what Weekes calls “skewed development.”

“There’s a vast difference between Freetown and other urban and rural areas,” says Weekes, sitting in his office at West Africa’s oldest Western-style university. “If you can improve development in other urban areas and in rural areas, you might be able to relieve some of the stress on Freetown.”

Dr Kolleh Bangura, the director of Sierra Leone’s Environment Protection Agency, says the growing population is forcing people to build on the hills, with little regard to building regulations.

There are zones where construction is banned, but “there is no respect for these green belt areas,” says Bangura.

He says it’s difficult to control the building, despite the dangers it poses, citing the “politicisation” of the issue and the brutal murder several years ago of a lands official who went to demolish illegal structures on a hillside.

The government puts little pressure on those carving up the hills now, says Bangura, who warns laws must be revisited and resources expanded to deal with the growing population.

Experts warn that if growth continues at its current rate, “serious problems” will beset this city, not just with loss of forest cover, but sanitation, water and electricity supply and other infrastructure, which is already hugely lacking.

Freetown is far from alone when it comes to the scramble to find space for ever-burgeoning populations on inhospitable terrain. From Pakistan to the United States to the Philippines, people are settling on steep ground, with sometimes devastating consequences.

Weekes attributes the burgeoning crisis to unbridled population growth and rural-urban migration, as thousands flock to the city in hopes of better opportunities. Part of that is due to what he calls “skewed development.”

“There’s a vast difference between Freetown and other urban and rural areas,” says Weekes, sitting in his office at West Africa’s oldest Western-style university. “If you can improve development in other urban areas and in rural areas, you might be able to relieve some of the stress on Freetown.”

Cyril Mattia, spokesperson for Freetown City Council, says Sierra Leone’s civil war, which ended in 2002, brought many people to the city. Some never left. The growing population, he says, is “destroying the very fabric of the municipality.”

Mattia says many of the structures carved out of the hillsides are not authorised.

He says the bulk of responsibility for planning and enforcement of the city lies with the national government, but the municipality works on “sensitisation” to encourage people to avoid unsafe areas.

“Most of the land has been encroached upon and they are very hard to remove because of political reasons,” says Mattia. “We have huge rainfall in this country and people are also playing with the soil.

“Eventually disaster will occur.”

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