Epilepsy Uganda

Epilepsy is a group of neurological conditions characterized by epileptic seizures. During a seizure groups of neurons fire randomly and excessively. The causes of epilepsy are unknown but epilepsy may develop as a result of (see Wikipedia):

Brain injury
Stroke
Brain Tumors
Brain infections
Birth defects

60% of seizures are convulsive involving involuntary movements of the body. The remaining 40% are non-convulsive and may not be noticed, for example in something like an absence. A seizure can affect one side of the brain or both sides of the brain.

The survey, Epidemiology and aetiology of epilepsy in sub-Saharan Africa, which was a survey of several reports shows in one report that there is an estimated incidence of 156 cases of epilepsy per 100,000 people each year in Uganda. This means that based on a 2014 population of 34,900,000, more than 55,491 new cases of epilepsy each year in Uganda. A second report surveyed suggests that 13% of the population of Uganda have had seizures in their life.

A 2009 report by the World Health Organization (WHO), Global disparities in the epilepsy treatment gap: a systematic review, says there is a treatment gap of more than 95% for epilepsy in Uganda. That means that more than 95% of people with active epilepsy are not receiving the correct treatment for their epilepsy.

The 2013 report Prevalence of active convulsive epilepsy in sub-Saharan Africa and associated risk factors: cross-sectional and case-control studies shows that approximately 1.8% of the Ugandan population has active epilepsy. That means that based on 2014 population of 34,900,000,  628,200 Ugandans have active epilepsy.

During a seizure groups of neurons fire randomly and excessively

What are the reasons for the treatment gap for epilepsy? The 2012 study “Epilepsy is pathognomonic of witchcraft”: parental perspectives on childhood epilepsy and their treatment choices in South West Uganda has the following interesting comments to make about the treatment gap in their abstract:

Childhood epilepsy is a common, socially stigmatising and largely treatable disease. Despite this there remains a large treatment gap between the number of children with epilepsy and the number receiving appropriate anti-epileptic drug (AED) treatment. To understand reasons for the treatment gap, treatment methods and beliefs of carers were prospectively analysed for 18 children with epilepsy attending the paediatric neurology clinic at a government hospital in Uganda.
The majority of carers (61%) believed that their child's seizures had a supernatural explanation. Of these, 40% believed that their child had been bewitched or possessed by evil spirits and 50% believed that their child's seizures were caused by “Ebihungu” (meaning “birds”). 83.3% of the children with epilepsy had used complementary therapists before attending a Western medical health facility. Of the respondents using complementary therapists, 73.3% used traditional healers alone, 6.7% used spiritual healers alone, and 20% had been treated by both. Traditional healers used herbal remedies, charms, rattles or scarification marks. The cost of visiting hospital was considerable, both in transport costs and time away from farming. Traditional healers incurred great cost in the purchasing of herbal remedies. The average duration of time before starting appropriate AEDs was less than one month for children who received no complementary therapy, and 22 months for children receiving treatment from traditional healers. The influence of the family's social network on treatment seeking behaviours was considerable. 46% patients continued to use traditional medicine or spiritual healing whilst taking AEDs, suggesting many of the caregivers perceived some continuing benefit from these alternative treatments.
The popularity of alternative practitioners in the treatment of epilepsy and their continued use when taking AEDs underlines the perceived usefulness of the treatments they offer. Programmes to decrease the treatment gap in childhood epilepsy would need to include close collaboration of Western medical practitioners with traditional healers, who could help identify and refer children with epilepsy, whilst continuing to play a supportive role in the community in a culturally sensitive way. This collaboration is important as neither Western medicine nor complementary therapists can satisfactorily manage the needs of the patient and their family alone.

Epilepsy is subject to stigma and prejudice, meaning that those suffering from epilepsy do not get the correct treatment, this article, Epilepsy causes social stigma in Uganda, states the problem clearly:

Epilepsy is twice as common in Africa south of Sahara as in the industrialized countries. But the sufferers seldom get the right medical treatment. The patients are met with prejudice about witchcraft and stigma and are often taken to the traditional healer instead of to the established health system. And those who seek help in the health system often face a lack of appropriate medicines. Wrong medical treatment can have fatal health consequences, and a new cross disciplinary research project at The University of Copenhagen now investigates the use of medicines for children in Uganda
Throughout history epilepsy has, also in the Western world, been linked to myths about its causes and treatment. The illness has been considered to be caused by anything from demonic possession, punishment from the gods or lunacy. On the African continent, epilepsy is still linked with prejudice and this leads to major problems with wrong diagnoses and medicine use. In Uganda there are officially 156 new cases of epilepsy per 100,000 citizens every year, but the number is estimated to be far higher:
"We know there are at least twice as many cases of epilepsy South of Sahara as in the industrialized world. It is difficult to say exactly why, but researchers work with the theory that parasites in the brain can contribute to the disease," explains Ebba Holme Hansen, professor at the Faculty of Pharmaceutical Sciences, at the University of Copenhagen. She is coordinating a new research project in Uganda which among other things focuses on the local population's understanding of epilepsy.
"The epilepsy sufferers are confronted with prejudice and stigma because of the violent seizures which make the patient lose control, roll the eyes back and foaming at the mouth. Neighbours and families often assume the sufferer is possessed by evil spirits and, further, the condition is wrongly considered as being contagious," says Professor Holme Hansen.
Epilepsy is mistaken for malaria: The local population hesitates to contact the established health system which offers free medical treatment to patients when the correct diagnosis is made. Instead people prefer the traditional healer who tries to force the evil spirits away with herbal potions and rituals. In the established health system epilepsy is categorized as a mental disorder similar to depression and alcoholism.
Another problem is the side effects of the epilepsy drugs. Epilepsy drugs can cause drowsiness and this in turn can cause trouble for schoolchildren, reinforcing the stigma. For this reason the local Ugandan people are liable to interpret the symptoms as malaria, which also is a serious disease but far more common and far less controversial than epilepsy. At the same time the epileptic seizures can be mistaken with the fever cramps from severe malaria.
Focus on children and medicine use: Wrong diagnoses lead to wrong medical treatment, and combined with lacking medical supplies this has fatal consequences. This is the focus of the new interdisciplinary research project Quality Medicine Use for Children in Uganda, which investigates the use of pharmaceuticals for children in Uganda:
"Currently there is very little established knowledge about children and medicines in Africa, but we have strong indications of wrong use of medicines and medical malpractices in connection with e.g. epilepsy resulting in grave health problems. One cannot treat children as small adults and simply minimize the doses. It is complicated and children are a fragile patient group", explains Prof Holme Hansen.
In Uganda tablets for treatment of epilepsy are free, but the liquid medicine which is more suitable for children is very expensive - and the family pays the bill. But even if they wish to buy the medicine, they cannot be sure to get it.
"The health clinics have a certain amount of money to purchase drugs for and epilepsy medicine is often prioritized lower than e.g. antibiotics. Hence, even if your child suffers from epilepsy and you wish to buy the right treatment it can be difficult to receive the medicine", says Professor Ebba Holme Hansen.

Bearing in mind the treatment gap and the associated stigma and prejudice it is interesting to see the experience of a child with epilepsy in Uganda. This article, Raising an epileptic child, discusses some of the problems parents encounter bringing up a child with epilepsy:

Jjuuko Batesita, 9, looks pale, is weak and unable to walk due to abnormalities brought on by illness. According to his parents Proscovia Nabayinda and Julius Sserwadda, the boy seemed normal in his early years.
On carrying him, one discovers that he has no muscle tone particularly in his arms and legs, which forces him to fall.
From his wheelchair, one can see that his skin is covered with rashes.
His mother says when she gave birth to him in 2007 at Kyannamukaaka Health Centre III, she didn’t notice any problem. She says the baby began to lose appetite for both food and drinks at one and half years of age.
The couple, who are residents from Kibutamu-Kabira in Rakai District, went in search of something to stimulate their son’s appetite.
“Doctors recommended that we buy soya and also juicy fruits which we tried for several months,” Nabayinda recalls.
By the time Jjuuko was expected to start walking, he made no efforts to move. This prompted the couple to visit Kyannamukaaka Health Centre III to find out what had gone wrong with their son.
They were, however, referred to Mulago National Referral Hospital where doctors discovered that Jjuuko was suffering from epilepsy brain disorder. It was then recommended that he undergoes surgery.
“My son was weak and also had difficulty in breathing,” Nabayinda adds.
Since the family could not afford the Shs1m which was required to carry out an operation, they continued giving Jjuuko some tablets such as carbamazepine and folic acid which, they say, give him some relief.
Three years since Jjuuko left Mulago Hospital, he has been seeking treatment at Kyannamukaaka Health Centre.
“The daily expenses in Mulago were too high and the doctors told me that if he is to be operated , it would require over Shs1m which we could not afford as a family,” Nabayinda adds as her eyes brims with tears.
Every week, the family gets treatment worth Shs72,000 at Kyannamukaaka Health Centre a long with other requirements such as a bottle of honey. Jjuuko’s mother adds that he also suffers diarrhoea and frequent colds.
According to Dr Owor Bosco, who handles Jjuuko at Kyannamukaaka Health Centre III, the latter needs intensive care and treatment.
“Jjuuko is seriously sick. He needs intensive care and treatment. We are trying our best, but medication for his congenital abnormalities are expensive,” Dr Owor says, adding that the boy also faces a challenge of muscle stiffness and rigidity which makes him unable to walk.
Dr Owor encourages Nabayinda and her husband to feed the patient with adequate greens and fruits so that hehe can enough energy.
“I also advised them to give him porridge (soya) accompanied with one spoon of margarine everyday,” he adds.
According to Fr Paul Lumala, a Clinical Science and Counselling expert, all types of diseases can be treated. “Parents should be conscious of their children who suffer from these illnesses and search for treatment when it is still early. Epilepsy damages the central nervous system,” Lumala explains .
A patient with epilepsy is advised to do enough physical exercise and also eat foods rich in iron and calcium which strengths the bones and teeth. Lumala dismisses claims that epilepsy is a result of witchcraft .
“This disease is real and it can be treated in Butabika and even Mulago Hospital. People who take it for granted and call it witchcraft are simply ignorant,” he says.
He advises parents and other caretakers of children suffering from epilepsy to always shield them from getting in touch with fire, ductile and other glassware materials which may be harmful to both the victim and others .
Epilepsy explained: Epilepsy, according to medical experts is a group of related disorders characterised by a tendency for recurrent seizures. A seizure occurs when a burst of electrical impulses in the brain escape their normal limits. These spread to neighbouring areas and create an uncontrolled storm of electrical activity. There are different types of epilepsy and seizures.
Epilepsy drugs are prescribed to control seizures, and surgery may be necessary if medications are ineffective.
When identifiable, the cause of epilepsy usually involves some form of injury to the brain. For most people, though, the cause of epilepsy is not known.
According to the Epilepsy Foundation based in the US, there are about 180,000 new cases of epilepsy each year across the world. 30 per cent of these occur in children. Children and elderly adults are the ones most often affected. In Uganda, there are 156 documented new cases of epilepsy per 100,000 citizens every year, but the number is estimated to be far higher.
How epilepsy is treated: The majority of epileptic seizures are controlled by medication, particularly anticonvulsant drugs.
The type of treatment prescribed will depend on several factors, including the frequency and severity of the seizures and the person’s age, overall health, and medical history.
An accurate diagnosis of the type of epilepsy is also critical to choosing the best treatment. Medications used to treat epilepsy include; carbamazepine, diazepam and phenytoin phenobarbital.
The choice of drug is often based on factors such as the patient’s tolerance of side effects, other illnesses he or she might have, and the medication’s delivery method.
Although the different types of epilepsy vary greatly, in general, medication can control seizures in about 70 per cent of cases.
However, these drugs have also side effects to the patient. The occurrence of side effects depends on the dose, type of medication, and length of treatment. The side effects are usually more common with higher doses, but tend to be less severe with time as the body adjusts to the medication.
Anti-epileptic drugs are usually started at lower doses and increased gradually to make this adjustment easier. One of the best rules in medicine is to ‘’go low and go slow.’’
Side effects may include; double vision, fatigue, sleepiness, stomachache, skin rashes, low blood counts, liver problems and at times hair loss.
First aid for a patient: Different types of seizures may require different responses. It is applicable that an epileptic patient should always carry medical identification, in case of an emergency. Knowledge of his or her seizure disorder can help people around to provide appropriate medication.
Also relatives should reassure the child and check to see if he or she got hurt from the fall. If the seizure is a first occurrence, a medical check-up is recommended.
Parents are also advised to move child away from hard, sharp, or hot objects. Put something soft under child’s head.
Turn child on one side to keep air route clear. Do not put anything in child’s mouth or give liquids or medicines during or immediately after the seizure.

Is epilepsy a disability? I was surprised to learn that some people in Uganda do not consider epilepsy to be a disability. In the blog Albinism in Uganda it was shown that when a person with an impairment or disability interacts with the world around them they encounter barriers. This is called the social model of disability (see Models of Disability). Epilepsy is clearly an impairment. Stigma and prejudice come from peoples attitudes and are barriers. In short epilepsy can be considered a disability because people with epilepsy face the same barriers that persons with disabilities (PWDs) face getting an education, finding a job, finding a home, and gaining respect from others because of the stigma and prevailing myths about epilepsy (see Epilepsy Ontario: The Human Rights Code.

In summary, epilepsy is a heavily stigmatized illness that has many superstitions attached to it. Given the correct treatment, most people with epilepsy will be able to manage the symptoms, some will even be able to stop taking the drugs they are taking. There is a vast gap in knowledge about treatments that means many people do not get the correct treatment. This treatment gap causes the needless suffering of many people with epilepsy. We owe it to the more than 55,000 who will be diagnosed with epilepsy each year to remove the stigma and prejudice and get the treatment right.

For more information about Epilepsy contact the Epilepsy Support Association Uganda (ESAU).