Epilepsy — Keep patients out of the shadows

By Rebecca Kwei
Preliminary results of a study conducted by the Department of Psychiatry, the Neurology Unit, all of the University of Ghana Medical School, and the Kintampo Health Research Centre show that there are increasing numbers of people living with epilepsy in the three northern regions and parts of Accra.
However, similar studies have not been conducted in the other regions. According to a Neurologist at the Korle Bu Teaching Hospital, Dr Albert K. Akpalu said epilepsy formed 30 per cent of all cases seen at the neurology clinic.
The World Health Organisation estimates that of the 10 million people in Africa who live with epilepsy, eight million are not treated with readily available modern drugs. Other statistic shows that the number of new cases of epilepsy detected among 100 000 people during one year were: 83 in Burkina Faso, 64 in Ethiopia, 73 in Tanzania, 119 in Togo, and 156 in Uganda. These incidence rates are higher than those reported from the developed world, which usually range from 40 to 70 per 100 000 people.

What is epilepsy?
Epilepsy is a disorder that disrupts the transmission of electrical signals inside the brain. While it is more common in childhood and after 65 years, epilepsy can develop in any age. Normally, all functions of the brain are enabled by electrical impulses that travel between nerve cells. Epileptic seizure occurs when the nerve cells in the brain generate sudden, uncontrolled bursts of electrical activity. Normal communication between nerve cells become confused. Our thoughts, feelings or movements become uncontrolled for a short period of time. Dr Akpalu says if one has two or more seizures in a year, then that person is said to be living with epilepsy.

Is it a curse or spiritual disease?
Dr Akpalu was very emphatic that epilepsy was not a spiritual disease; neither was it caused by a demonic attack, curse or witchcraft but purely a manifestation of abnormal electrical activities in the brain, which is non-communicable and treatable.

Causes
Dr Akpalu says the causes of epilepsy has been put in three categories by the International League Against Epilepsy — the structural problem which has to do with abnormalities in the developing brain; the metabolic or functional and the idiopathic which is the unknown causes. Additionally, epilepsy can also be caused by infections such as meningitis, post cerebral malaria, peri-natal (around birth) factors, poor maternal health and delayed labour. Again, lack of oxygen to the brain after a stroke, head injuries causing scar tissue in the brain, tumours, degenerative conditions such as Alzheimer’s disease and dementia, family history of seizures, use of certain illicit drugs and intake of excessive alcohol can also cause epilepsy.

Stigma and discrimination
The biggest concern for Dr Akpalu and other health practitioners who treat people living with epilepsy is stigmatisation and discrimination. “Because epilepsy is plagued by myths and superstition in Ghana and in Africa, people living with epilepsy are highly stigmatised and discriminated against. Our traditional and belief systems influence the expression of stigmatisation and this has taken a toll on people living with epilepsy causing impaired physical, psychological and social functioning of those affected,” Dr Akpalu said. For instance in Ghana, if a family has someone living with epilepsy, then people are strongly advised not to marry from that family. This practice, Dr Akpalu said should be discouraged.
Reports from Sub-Saharan African generally indicate that people believe seizures to be contagious, spread by saliva, urine, faeces or flatus expelled during a convulsion. The fear of epilepsy being contagious results in stigmatisation.
However, Dr Akpalu says epilepsy is not contagious and is not spread by saliva, urine, faeces or flatus. Supernatural beliefs, such as witchcraft, are frequently cited as causing seizures or a person versed in magical arts may ‘‘put a curse’’ on someone, thereby draining the family`s precious financial resources.
“When patients and or their families hold supernatural beliefs regarding seizures, care seeking will be directed toward traditional healers or churches rather than hospital or clinic, resulting in delayed medical treatment” Dr Akpalu noted.
People taken to such traditional healers and churches are chained, flogged and given concoctions but Dr Akpalu advised that although it was good to pray, it was also very important to seek medical care immediately one experiences any form of seizure to be diagnosed.
Discrimination on the grounds of epilepsy manifests itself in all spheres of life, including health care, educational systems, employment, social and family life. For example in Côte d’Ivoire, people with epilepsy have to wash their clothes separately and ladies are not allowed to cook meals. Workers must also use their own tools and should not mix them with the group’s. In Burkina Faso’s Nankara ethnic group, people with epilepsy are not allowed to make speeches during traditional assemblies. When they die, they are not buried, but are thrown into the mountains or the sacred bush. Most people in the Gambia attribute the immediate cause of epilepsy to malevolent spirits. Behaviours such as bathing late at night or fetching water late at night by pregnant women are also believed in the Gambia to predispose to epilepsy. In northern Ghana and Zambia, epilepsy is thought to be caused by the projection of the shadow of a bird flying over one’s head. People living with epilepsy who fall into open fire during an attack are believed in northern Ghana to be untreatable thereafter.
In many African ethnic groups, people with epilepsy cannot marry, although this is not specific to the African continent. They may also not be permitted to participate in traditional ceremonies celebrating the passage to adulthood.
But Dr Akpalu said people living with epilepsy can marry and lead normal lives once the seizures are controlled. “I see patients who are politicians, pastors, nurses, lawyers, doctors, etc,” he said.
A survey by Agbohoui (1994) conducted in schools revealed a high rate of social withdrawal among children living with epilepsy. The study revealed that in certain instances children are denied access to education out of shame on the part of the family or the school’s refusal to accommodate them for fear of “contaminating” other pupils.
“Ignorance about epilepsy and the effects of some antiepileptic drugs often leads to misinterpretation of certain behaviours, such as drowsiness, memory impairment and attention deficits which are mistaken for laziness and lack of interest among teachers,” Dr Akpalu noted. However, Dr Akpalu said children living with epilepsy do not have to be withdrawn from school and that those he treats are very intelligent and through proper care can be helped to live healthy, normal lives.
Due to the seizures, people living with epilepsy are advised not take jobs as heavy duty drivers or crane operators but regulations regarding epilepsy and driving are not uniform across the region and this according to Dr Akpalu must be addressed. The consequences of stigmatisation and discrimination of people living with epilepsy are low self esteem often complicated by scars from injuries, shame and rejection by families and society.

Realities
Mrs Francisca Aba Larbie has been living with epilepsy for the past 33 years. She started having seizures at the age of six. According to her, she used to be very worried about living with the disease because she thought she would not get anyone to marry her till she met her husband.
“I have a very supportive husband and I am not worried anymore,” she says. Talking about her seizures, she said she feels it when she is about to have an attack but does not remember anything after that. After the seizure, she only feels tired. Mrs Larbi said living with epilepsy did not mean one could not lead a normal life and it was important for people not to look down on epilepsy patients.
Mr Thomas Larbie, a banker who has been married to Francisca for the past five years, says being married to someone with epilepsy has not been easy and can be very challenging but he was a “proud husband.” He said knowing his wife’s health challenge did not deter him from marrying her because he was not concerned about what others thought and the stigma attached to the disease. “People had a perception that she will not be able to get pregnant and all sorts of things were said but my mind was made up,” he recalled. He said there had been a vast improvement in his wife’s condition since they got married and her situation had given him the opportunity to learn so many things such as how to handle people with similar conditions.
Mr Larbie was grateful to Dr Akpalu for his support as well as his family who had been very encouraging. The couple have two daughters — Pearl who is three years and Albertina (name after Dr Albert Akpalu), one year, three months old.

Treatment
Dr Akpalu said epilepsy can be managed with antiepileptic drugs. However, the challenge had to do with the treatment gap which is the difference between the need for effective treatment and the receipt of such treatment. There are specific drugs for the different types of seizures. Most patients in Ghana are not accessing care due to several factors paramount of which is stigma and traditional belief that seizures are spiritual in nature. Several interventions are being rolled out to reduce this gap. The NHIS and the new Mental Health bill are both important in this regard. The Korle Bu Teaching Hospital has started an Epilepsy Clinic which runs on Monday afternoon. It is run by Dr Akpalu, Dr Patrick Adjei and other residents. Dr E. Badoe runs the paediatric epilepsy clinic.

Legislation
Fortunately, the Mental Health Bill which has just been passed by Parliament will ensures that standards, conditions and rights are relevant for all facilities in order to prevent the abuse of people with mental disorder including physical and sexual abuse.
• Driving laws - none exist on when and what someone living with epilepsy can drive.
• Protection at workplace — there is no workplace policy for now.

Disclosure
This is a thorny issue that may lead to dismissal. We need human resource managers who understand the issues and problems and are supportive. Livelihoods Under the European Union/Basic Needs Livelihoods Project, 1200 poor people with mental illness and epilepsy engage in occupational therapy to enhance recovery and build their skills for improved well-being and livelihoods “I dropped out of school because of epilepsy, but this training will prepare me to earn a decent income in future,” said one of the beneficiaries.

Way forward
For Dr Akpalu, it is important to demystify epilepsy and empower communities through education and awareness programmes. This is actively being done by the Epilepsy Society of Ghana (ESG) of which he is the Secretary. “The way we refer to people suffering from epilepsy has changed from ‘epileptic’ to “people living with epilepsy. There is also the need to increase and improve pre-natal consultation and medically assisted delivery as well as improve maternal and infant immunisations.
Dr Akpalu said measures such as wearing of helmets and other personal protective clothing at work, prevention of road accidents, avoidance of excessive alcohol intake and environmental pollution could prevent the incidence of epilepsy. He also stressed the need to highlight, manage and prevent infectious diseases that affect the brain and also the training of more community health nurses.
“People living with epilepsy often suffer unwarranted exclusion or are prevented from taking part in certain activities for no good reason. We have to eliminate discrimination in all spheres of life. It is important for all to know that most patients can live a normal life with just minor restrictions. We must keep them out of the shadows,” Dr Akpalu said.

Fight Against Epilepsy to the rescue
An initiative known as Fight Against Epilepsy is in the offing to help improve access to care and services for people living with epilepsy. The Coordinator for the initiative, Dr Cynthia Sottie, said the treatment gap in Ghana was very wide — about 80 per cent meaning that out of the total number of people with the disease only 20 per cent receive treatment.
She said the project is to help bridge the gap and for people to know that epilepsy is not a mental illness but a neurological disease which is treatable.
Dr Sottie said the Initiative which has been implemented in China, Uganda and other African countries will promote training of all health care providers to be competent in diagnosing and treating epilepsy, and integrate provision of care and services for epilepsy into the primary health care system.
She also said awareness of community groups will be promoted and improved to decrease stigma and increase demand for epilepsy care as well as training of community volunteers to help identify people living with epilepsy who because of stigmatisation do not seek appropriate care.
Additionally, she said most children drop out of school because of the stigma associated with the disease so the initiative will also target teachers and train them on what to do when a child gets seizure at school. “Above all we want to increase awareness that epilepsy is not infectious; you won’t get it by touching the saliva or urine of anyone with the disease. Having epilepsy does not mean one cannot function. It is treatable and you can live a normal life” she stressed.
The initiative which is a World Health Organisation (WHO) and Ministry of Health (MOH) collaboration was launched in the Tolon-Kumbungu district in the Northern Region on September 26, 2012.

First aid
• Do not panic, stay calm
• Clear the area, let patient lie down without harming you or himself
• Check Airway, Breathing and Circulation (ABC)
• Avoid forcing things into the mouth e.g. spoons, mobile phones, etc.
• Keep comfortable till seizure is over • If seizures intractable > 5 minutes - hospital