20 April 2011

Epilepsy causes social stigma in Uganda

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.


Quality Medicine Use for Children in Uganda is a large, cross disciplinary research project coordinated from the University of Copenhagen. The project is a collaboration between researchers from the Faculty of Health and Medical Sciences, Life Sciences, Social Sciences and Pharmaceutical Sciences at the University of Copenhagen, Makerere University in Kampala, Mulago Hospital in Kampala  and the Ministry of Health in Uganda.

Four medication scenarios - four diseases

The cross disciplinary project analysis four different drug scenarios starting from four diseases: Epilepsy, HIV/AIDS, asthma and neglected tropical diseases (e.g. schistosomiasis).

The researchers also investigate the existing recommendations and policy in the area of children and medicine; how the medical legislation is put into practice; and if the economical means are optimally spend to give children the best possible medical treatment.