Henry Karutoche: From carrying charms to overcoming epilepsy

HEALTH  EPILEPSY

It was in 1992 that Henry Karutoche was first attacked by epilepsy, he was only 26 then. "I woke up to find people bending over me in my bed. I asked what they were doing only to be told I was sick," he says.

"Indeed I felt pain all over my body. I was told it was a Saturday and I had lost consciousness on Thursday," he says. 

Karutoche tried to go out of the house and take a break from the many people in the house however; he remembers falling down again, and family and friends pouring water on his head in aid.

They eventually left to consult soothsayers (fortune-tellers) on his fate. It was said it was the spirits of Karutoche's deceased parents that was upon him.

"In one corner of my house I prepared a temporary shrine, I was taken there and given words to utter to please the spirits. I did but my problems continued. Life became harder," he reveals.

Karutoche, his relatives and friends started visiting medicine men. 

"I started carrying fetishes (charms) to protect me from the spirits. That was all between 1992-1995, it was a difficult period. I moved from one medicine man to another," he says.

It was between Kisoro and Kabale districts. His family sold some land to be able to take care of him but there was no change. 

Karutoche lost hope; he resorted to consumption of hard liquor to get some relief but got none.

Epilepsy and how it occurs

Dr. Richard Idro, a Paediatric Neurologist at Mulago Hospital explains epilepsy as a neurological disorder, whereby the affected person gets unprovoked recurrent seizures or fits.

Seizures are brief episodes of involuntary movement (jerking) or abnormal sensations in the body.

"Seizures come as a result of excessive electrical discharges in a group of brain cells. A seizure can involve one part of the brain (partial seizure) or all areas of the brain (generalized seizure). A person will feel like things are moving in their body in the part controlled by the affected area of the brain. If the seizure involves the entire brain, it may come in form of convulsions that shake the whole body, with loss of consciousness," he says.

Idro explains the frequency of seizures vary from one person to another, it can happen a couple of times in a day, or even once a month or once a year.

However, Idro notes that a one-off seizure episode does not mean that one has epilepsy. In addition, anyone, at any age can develop epilepsy.

Causes

Some people are born with epilepsy; while others get it later in life, Dr Idro explains. Causes of epilepsy during the course of life are diverse.

They include trauma to the brain (for example in accidents), falls, a stroke and infections (such as cerebral malaria and meningitis), Dr Martin Kaddumukasa a Neurologist at Mulago Hospital explains.

In the case of accidents, he says a car accident and injury to the head can cause epilepsy. Common for Uganda is motorbike accidents.

Others risks factors are parasitic infections (such as tapeworms) that people consume in poorly cooked pork or chicken (meat). The worms get into one's bloodstream, then the spine and end up in the brain. 

As a result, "You find a person saying there is something burning when there is nothing burning, or you find a person partially going blind and then their eyes are working again," Dr Idro explains.

He notes that those born with epilepsy develop it during pregnancy and risk factors include viral and bacterial infections in a mother. Such infections include syphilis and rubella. Children also develop it a birth if a mother struggles through long labour or when a child gets measles.

Seeking God to heal

In 1996, Karutoche took to church for healing. That entire year he got no attack.  But in 1997 at 31 years of age while doing his ordinary secondary level final examinations at Nyaruhanga High School he got an attack.

When results were released he decided to join Kabale Core Primary Teachers College Bukinda to train as a grade three teacher but he was to suffer another epilepsy attack while doing his final exams in May 2000.

"What made me so angry and lose hope was that I passed with a distinction one, a distinction two, plus three credits but failed the final paper I was doing because I got the attack while doing it," he says.

Karutoche was aiming at a scholarship being offered by the college to the best student to pursue a diploma course. 

"I passed but came second with 21 points while the best student who was given the scholarship had 18 points. I lost because of epilepsy," he says.

Amidst all that Karutoche was having an apostasy (he was practicing both Christianity and following the African traditional devotion at the same time). 

He worshipped more than one God and was carrying his charms to protect him from the evil spirits.

The turning point 

It was in 2004 when Karutoche and his family decided to try a proper hospital because the traditional interventions were not working.

At Muko Health Center IV in Ibanda which is his home district in western Uganda, Karutoche and his family found a team from Epilepsy Support Association Uganda (ESAU) running a clinic. It was epilepsy day at the health center.

At that time the left side of his body from the leg, the arm, the eye and nose was paralysed. 

Karutocche knew that for a fact because one time while coming from school with fellow teachers, he put his hand in an irritating plant (ecurangenye) in the Ruyankole language and felt no irritation to show the nerves of his body were not working.

At the health center Karutoche was given counselling and started on medication, and his seizures (epileptic attacks) reduced.

Taking charge

In 2008 Karutoche was elected to represent people attending Muko Health Centre IV and living with epilepsy in a meeting in Kabale.

 "I found people living with the condition like me, taking medicine. I got relief and knew I was going to be fine," he says.

It was followed by a western region conference for people living with epilepsy and then a national one in Kampala. "We shared experiences and I got more hope that one day I will be fine," he said. It has worked.

Ever since Karutoche started medication in 2004 he has only suffered three epileptic attacks. The first was in 2004, the second in 2010 when he was in class at Ndeego Primary school teaching. 

"I have a scar on top of my left eye that resulted from my fall on the hard cemented floor," he says.

The third attack was in 2015 that happened on one early morning while he was on his way to church. "I found myself at Kabale regional referral hospital mental ward," Karutoche says. 

Overcoming epilepsy 

It can be controlled if a person gets proper counselling and medication, and one can live a normal life, says Karutoche who eventually did a diploma course at Kabale National Teachers College without attacks and got awarded a Second Upper-Class Diploma in Education awarded by Kyambogo University.

"My wife has stood by me through this condition for 27 years, she has never left me, that should tell that epilepsy is not contagious," Karutoche who is now the board chairman ESAU says.

He also the Chairperson of Muko Epilepsy Support Association that mobilizes people with epilepsy, and psychiatry health workers to support people living with epilepsy and also end the stigma around the condition.

"We are no longer stigmatized, we can now talk about our condition publically,' Karutoche says of the gains.

Dr Idro says more epilepsy patients are coming to hospital. He says it's mostly children brought by parents to receive treatment compared to adults.

Today February 10, 2019, is International Epilepsy Day which promotes awareness of epilepsy in more than 120 countries.

Improving epilepsy care

Last year, Uganda hosted the Africa epilepsy congress to think through directions of improving epilepsy care in the continent.

"In 2018 and 2019, we have collaborated with the British Paediatric Neurology Association to skill and standardize epilepsy care for doctors from among other Kenya, Ghana, Zambia, Zimbabwe and Uganda and the skilling will be also held in South Africa and Madagascar," Dr Idro says.

Dr Idro says so far three trainings have been held and have covered 130 doctors, paediatricians, medical officers, psychiatric clinical officers and nurses to improve epilepsy care and the fourth will be held in September this year.