Karutoche: From using charms to overcoming epilepsy

HEALTH

It was in 1992 that Henry Karutoche was first attacked by epilepsy, he was only 26 years then. "I woke up to find people bending over me in my bed.

I asked what they were doing, only to be told that I was sick," he says.

"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. Water was poured on his head as first Aid. 

His family and friends headed to soothsayers (fortune-tellers) for consultations 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, where I was taken and given words to utter, to please the spirits. This I did, even though my problems didn't cease. Life became harder," he reveals.

Karutoche and his relatives and friends started visiting medicine men.

"I started carrying fetishes (charms) to protect me from the spirits, 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 a piece of land to raise money to take care of him, with no change. 

Karutoche lost hope, resorting to consumption of hard liquor to get relief but got none.

Seeking God to heal

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

In 1996, Karutoche took to church for healing. He suffered no seizures the entire year.

Sadly, 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. He suffered 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 practising 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 centre.

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

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 centre, Karutoche was given counselling and started on medication which saw a reduction in his seizures (epileptic attacks).

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 that 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 Class Upper Diploma in Education awarded by Kyambogo University.

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

He is 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.

February 10 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 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.