21 November 2012

Kenya: Beauty Queen Speaks Out About Epilepsy

Nairobi — A Nigerian movie plays on the 14-inch television set above the reception desk. A June 2011 copy of International Epilepsy News lies on the seat next to me. Its cover reads 'Celebrating 50 years of fighting Epilepsy,' with fireworks behind it.

A phone rings shattering the lull the hum of the television had created. "Doctor Kioy's office," a receptionist says pleasantly into the phone, "I'm sorry. I cannot interrupt him when he's with a patient."

Other than a middle-aged lady who repeatedly blows her nose on her handkerchief, you wouldn't believe any of us waiting to be called into the doctor's office would be unwell.

I keep stealing glances at a young lady sitting adjacent to me. Of the lot of us, she seems the most likely to be a pageant queen given her trim figure and fair complexion.

Fingers painted in hot pink push hair back from her ear as she answers her phone and walks out the door. The summon finally comes and the receptionist ushers me to the doctor.

"Where's Bernice?"

"She's taking a call."

Bernice Mugambi, 23, is the reigning Miss University of Nairobi but as she enters Neurologist Paul Kioy's office she does so as one of one million people in Kenya living with epilepsy.

The title doesn't stay at the door however; Bernice puts it to good use enlightening the society on epilepsy. And what better time than now, the epilepsy awareness month!

"I thought I wouldn't be able to model again but my friends insisted I sign up for the pageant."

That was in March after being diagnosed as an epileptic in February.

Bernice's fears, as it turned out, were not completely unfounded. She had an attack during the finals for the Miss University of Nairobi pageant, which was held in March, barely a few days after her diagnosis.

"I'd just done the final round which was evening wear when I lost consciousness back stage. I think it was the flashing lights that triggered it."

Ten minutes later she was back on stage for the question-and-answer session and finally to accept her crown.

The last four years in Bernice's life have been a constant battle between epileptic episodes and normal life.

"I was first diagnosed as having depression and put on anti-depressants. They didn't work, they only made me sluggish. When the seizures didn't abate, I sought a second opinion and was told I was suffering from brain flares," she recounts.

"Epilepsy is perhaps the most common chronic neurological disorder I have to deal with second only to headaches. That being the case, it is also misdiagnosed in majority of the cases," Kioy says sitting across Bernice and I in a white lab coat, his examination bed behind him.

"A third of hard-to-treat epilepsy (symptoms) are not epilepsy and a good number of epilepsy cases are treated as something else entirely."

It is for this reason that Kioy founded the Kenya Society for Epilepsy. "When you sit in a medical clinic and find this is the commonest thing you have to deal with and it is a treatable thing that is not being treated, it challenges you."

Epilepsy, Kioy says, can be treated for as little as Sh500 a year assuming it is properly diagnosed.

"There is a wide range of symptoms that act as indicators you could be epileptic."

The flying saucer being one of them, "saucer because it happens mostly in the morning; your hand jerks and whatever you're holding takes flight."

"Looking back," Bernice says, "the signs were there. I remember holding a spoon when I was in high school and having it fall out of my hands."

A symptom Kioy says in itself is not conclusive evidence you have epilepsy but Bernice had other symptoms as well.

"My head would just drop and hit the desk or I'd just look dazed, my head would slump and my legs would begin to jerk."

"The dazed look," Kioy explains, "is called an absence seizure. If you are cycling, you'll keep cycling but you won't be conscious."

A seizure then doesn't always mean you'll drop to the ground your entire body jerking and foam coming out of your mouth, I ask?

"Having an out-of-body experience, feeling like there's water instead of blood flowing through your veins, feeling like there are insects crawling up your skin, all these could be indicators you have epilepsy."

And these are not the strangest symptoms an epileptic person could experience, "Activities such as eating are undertaken without thinking and you could find yourself chewing at an inappropriate time."

Symptoms such as these fall on the milder side; epilepsy can be life threatening, "Your muscles could completely tense up or cease to function causing you to fall like a log."

The jerking associated with epilepsy, Kioy says, leads to stigma that keeps people from seeking professional help.

"I remember people saying I must have been bewitched," Bernice confesses, "that somebody must have spoken ill of me."

"In some communities spiritual possession is looked upon positively but not in most. Who would want to hang around somebody they thought to be demon possessed?" Kioy adds.

Demon possession is not one of the known causes of epilepsy but brain damage does increase the risk of Epilepsy by 25 percent, "Epilepsy is more prevalent in the rural areas than it is in the urban areas due to a shortage in health care facilities. An infant's brain could be damaged in the birthing process."

Genetics do increase the risk of getting epilepsy but not significantly so, "it's no reason not to marry Bernice. The average person's risk of getting epilepsy is five percent. If there's a history of epilepsy in your family it goes up to eight. But a brain tumour increases your risk by forty percent, a stroke by thirty and meningitis by fifteen."

Alcohol and drug abuse are other risk factors associated with Epilepsy.

I hear a chime. Our hour is up. Kioy has a room full of patients waiting to see him. Bernice slings the straps of her bag over her shoulder and leads the way to the door. In a little over a year it could be the last time she has to see a doctor because of epilepsy.

"If we can get you seizure-free for up to two years you can go off your medication. This happens in sixty percent of epilepsy cases," Kioy concludes.

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