Overcoming the stigma of epilepsy in Kenya

Bernice Mugambi was epileptic for years but was misdiagnosed severally. Now a student at the University of Nairobi, she is the reigning Miss UoN and has been picked as ambassador to the National Epilepsy Co-ordination Committee.

Bernice Mugambi was epileptic for years but was misdiagnosed severally. Now a student at the University of Nairobi, she is the reigning Miss UoN and has been picked as ambassador to the National Epilepsy Co-ordination Committee.

Bernice Mugambi is beautiful. She has to be; she is the reigning Miss University of Nairobi. Young, brilliant, and gracefully tall, the Fourth Year student of food nutrition and dietetics cuts the picture of a woman whose life journey will be full of fine things.

Her recent past, however, had some not-so-fine things. Bernice was diagnosed with epilepsy last year, but her condition started when she was in Form Four at Loreto Girls’, Limuru.

It all started during one lunch break. She was having lunch when she started feeling dizzy, then her spoon fell to the floor. The dizziness continued and, before she knew what was going on, she fell to the floor too. At the health centre, she was treated for anxiety and depression because there was nothing to treat.

From then, her stay in school was an in-and-out affair. A few days in school, a few more days out. As her final exams got closer, some members of staff thought she was faking illness to avoid sitting the tests. Eventually, she had to sit the examination from her dispensary bed. She scored a B+.

By 2009 she was having frequent seizures and going from one doctor to another. Her parents, supportive and understanding, took her to a neurosurgeon in 2010. The doctor said she was having brain flares. They performed a computer tomography scan (CT scan), ran blood tests, and tried magnetic resonance imaging (MRI), but all these tests revealed nothing. However, no electroencephalogram test (EEG), which is critical in diagnosing epilepsy, was done. At this point she was constantly on medication.

It was not until she joined the University of Nairobi and described her symptoms (fainting, seizures, dizziness, and memory lapses) that the university doctor casually told her that she could be suffering from epilepsy and referred her to a specialist. The doctor’s hunch was correct. She had been suffering from epilepsy all along.

She has since gone on with her higher education, been chosen Miss University of Nairobi, and picked as the ambassador of the National Epilepsy Coordination Committee.

Bernice’s story sounds extraordinary. It is a story of courage and hope and triumph. But not many people who suffer from epilepsy can tell such stories, and not many non-sufferers would expect to hear such a story from an epilepsy patient. And this is the challenge facing epileptics in the country.

Eddy Chengo, an epileptologist (specialist in epilepsy care), explains that epilepsy can be caused by anything that injures or damages the brain. During birth, injuries to the head of the baby and complications like the baby coming out the wrong way are risks that may lead to or increase the chances of one suffering from the condition.

From the first day of birth till Day 60, other risk factors also come into play, and these are mostly brain infection-based risks, including meningitis, cerebral malaria, and brain tumours.

“Among adults, known risk factors are vascular diseases, stroke, and excessive and prolonged alcohol intake. Also, injuries to the brain — for instance, from accidents or other brain infections as with the babies — are also risk factors,” he explains.

But about 50 per cent of victims have cases where the causes cannot be identified, which Dr Chengo attributes to technological limitations in the country.

Dr Anthony Ngugi, an epidemiologist at Kemri, offers other insights into conditions that can lead to epilepsy, particularly parasitic infections that can attack the brain among babies. Some of these are parasites from pets, including cats.

Asphyxia, which occurs due to a delayed birth process and leads to inhibition of oxygen supply to the baby’s brain, can also increase the risk of epilepsy.

Specialists have also linked some epileptics to hereditary conditions, but opinion is still divided on the veracity of the claims. Medical evidence, says Dr Chengo, shows that if one parent has epilepsy, then the child has a four to six percentage chance of being epileptic, and if both parents have the condition, that risk increases to between 12 and 20 per cent.

He, however, says there is no agreement among specialists on this point due to the fact that most causative agents are external rather than internal.

One of the reasons for the misconceptions about epilepsy is unclear understanding on how it manifests. This is because epilepsy, unlike other medical conditions, does not have what can be termed as obvious signs and symptoms. When Bernice started suffering, it started by a feeling of dizziness, then seizures came in, and fatigue. With time her seizures became frequent before loss of memory set in, to the point where she had to write things down or else she would not remember anything.

Her experience, though, is different from that of Karijn Aussems. Born in the Netherlands but living in Nairobi, Karijn lived with epilepsy for 22 years.

During this period, she experienced seizures, during which she would fall and shake. Apart from that, she would have attacks during which she would simply talk incomprehensibly and insensibly and would later not remember what she said.

And, like most epileptics, she says she could predict when she was going to have an attack by a strange feeling in her stomach. Luckily, her condition had been caused by a brain tumour and, after surgery, she recovered.

Most people group epilepsy in the same set as life’s incapacitating conditions. This, however, is far from the truth. First, according to doctors, some forms of epilepsy are curable. This is done through brain surgeries, especially for those patients who have growths or tumours in their brains.

But most patients have to rely on control mechanisms. When under medication, patients have a chance of reducing the frequency and severity of attacks. In fact, medical figures put the rate of seizure-free patients on medication at 70 per cent of all drug users, meaning seven out of 10 people who use anti-epileptic drugs show considerable reduction in frequency and total freedom from fits.

Drug use should be supervised, though, and patients are supposed to continue with the medication even when the attacks subside. Should they stop, they may relapse into frequent seizures and attacks.

Doctors also recommend complimentary therapy, for example, meditation and yoga. They also stress the importance of observing proper diet as part of complimentary therapy. It is best if patients are put on high-fat, low-carbohydrate, and adequate-protein diets, especially those with the strain of epilepsy that is difficult to control and children.

The biggest problem with the condition, however, is societal. Karijn explains that once people know a person is an epileptic, they start treating one like as an incapacitated victim. Most relatives take over their duties to the point where, even in a conversation, some member of the family or friend will want to answer questions on their behalf.

The other notable problem is misinformation on the causes of epilepsy. Many people, particularly in rural areas, believe that those suffering from epilepsy have been cursed. Many also look at epileptics as people possessed by evil spirits.

So prevalent is this misinformation that most people who suffer from the condition would rather stay silent about it and let the secret remain in the family than have the public know their status. In some families, patients are kept indoors, away from the public.

The society, out of its limited understanding of the condition, has in some cases turned patients into outcasts or suggested that the patients be taken away for prayer, to some mental institution, or to a traditional healer.

“Lack of the right information is the biggest hindrance to treatment and control,” says Dr Ngugi. He also laments at the cost of drugs, which he says is high for many, never mind the fact that the availability of the drugs is erratic, especially in rural areas.-Nation




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