By Julius Anointing. Freelance Health Writer and DLHA Volunteer. Medical review and editorial support by the DLHA Team
Simulation: Man asleep in bed post epilepsy. Image credit: rawpixel.com on Freepik
Introduction
Epilepsy is a brain disorder that is caused by repeated occurrence of unprovoked or spontaneous burst of electrical overactivity in the cells of the brain and presenting as uncontrolled seizure. It affects people of all ages and backgrounds. While the condition occurs globally, its impact is particularly significant in sub-Saharan African countries.
This article explores how common epilepsy is within sub-Sahara Africa, delving into the statistics, trends, cultural considerations, causes, risk factors, treatment options and the challenges in accessing care.
Epilepsy presents as a seizure due to spontaneous burst of electrical overactivity in the brain. But not all seizures qualify to be labeled as epilepsy. For a seizure to be labeled as epilepsy, it must be unprovoked or spontaneous and occur at least twice over a 24 hour interval.
The brain contains hundreds of thousands of nerve cells that communicate with one other through coordinated nerve signals. The nerve signals direct the normal functions of the brain.
Seizures occur when the normal, coordinated signals between nerve cells are replaced by a sudden and irregular burst of electrical overactivity in the brain that can show in a range of symptoms that interrupts normal brain directed activities. These symptoms might include strange feelings, anbormal movements, or behaviors.
Epileptic seizures can vary significantly in their nature and severity, and they are essentially categorized into four basic types as described below.
Currently, four broad types of seizures and by extension epilepsy are recognized as follows:
These arise in a single region of the brain. The symptoms differ based on the area of the brain affected.
Focal (Partial) seizures are also of two sub-types,
Generalized seizures, on the other hand, reflect the spread of disorganised electrical activity throughout the whole brain. It is associated with loss of awareness (consciousness) and usually, generalised shaking(fits) through the body. Sub-types of generalised seizures are described based on the specific features of the seizure pattern, as follows:
Each of the sub-types of epileptic seizures will be discussed in greater details in separate articles later.
This type of seizure combines the features of both Focal (Partial) and Generalised seizures, The seizure may start as a focal one and it subsequently generalises (that is spreads to involves the entire body).
When there is incomplete information about the features of a seizure or it is unusual in its presentation, it could be regarded as unclassified or uncategorized.
In almost 50% of cases, the cause of epilepsy is unknown. But several causes or risk factors have been described and some of these include: [1, 5]
Research reveals that hereditary factors contribute considerably to the development of epilepsy. In the African population, research has studied the genetic foundations of epilepsy, demonstrating a complicated interaction between genetic and environmental influences. Certain genetic markers and susceptibility genes have been found, suggesting a genetic basis for the occurrence of epilepsy in various African groups. [4]
Understanding the unique genetic components is vital for customizing diagnostic and therapeutic methods for diverse populations. [4] The variety of genetic origins across Africa needs a detailed study across specific ethnic groups.
One of the primary signs of a probable genetic susceptibility to epilepsy is a positive family history of the condition. Individuals with a family history of epilepsy may have an increased chance of suffering seizures themselves. Studying the frequency of epilepsy within families gives vital insights into the genetic basis of the disorder.
Research has indicated that the risk of epilepsy is increased in persons with close relatives, such as parents or siblings, who have been diagnosed with the illness. The discovery of particular genes related to familial epilepsy can assist in early diagnosis, risk assessment, and the creation of personalized therapies.
Despite breakthroughs in genetic research globally, problems exist in understanding the genetic variables leading to epilepsy in the African population. The limited resources, infrastructure, and poor availability of genetic testing services offer barriers to performing large-scale genetic investigations across African nations. Additionally, the complex genetic landscape of Africa demands coordinated work across regions and ethnic groups to thoroughly understand the genetic basis of epilepsy.
But recognizing the importance of genetic variables, particularly family history in epilepsy has consequences for therapeutic practice.
Healthcare providers can utilize this information to assist diagnostic assessments and adapt treatment regimens. Individuals with a family history of epilepsy may be followed more closely, and preventative steps may be adopted to lower the chance of seizures.
Insults or trauma to the brain may cause seizure immediately after or several months thereafter. The more severe the trauma the higher the risk of seizure occurring..Age and medical conditions may affect the risk of epilepsy following brain trauma.
A US CDC funded study showed that 1 in 10 people aged 15 years and older that are hospitalized for brain trauma will develop seizure within 3 years of their injury. [6]
Infections and infestations are among the most common risk factors for preventable epileptic seizures globally and more so in resource poor countries, such as in many in sub-Sahara Africa.. The infections and infestations may range from bacterial, virus, and parasitic.[7]
Several research studies have identified different and very complex developmental factors that are associated with the causation of epileptic seizures after birth.
Some of these factors include:
A clear understanding of these complex developmental factors helps to shape epilepsy prevention and therapy.
Metabolic epilepsy can be caused in any of the following three ways: [9]
The very complex interplay between metabolic derangements and epilepsy is essential to recognize prior to and during the care of the epileptic patient.
Seizures are very common in cases of brain tumours and brain tumour epilepsy (BTE) impacts significantly on a patient’s quality of life.
The occurrence of BTE may be as high as 60- 80% with certain sinister and aggressive cellular types of primary brain tumors that are located in specific areas of the brain .
On the other hand, the occurrence of BTE in benign or non-aggressive brain tumours may be as low as 20 – 50%.
Fewer BTE occurs in patients with metastatic brain tumours (i.e., those that form from cancer cells from elsewhere in the body and get lodged in the brain. [10]
After brain tumour removal following surgery, approximately 60–90% are of patients are BTE free.
So, a thorough understanding of the rates and predictors of seizures in brain tumours, and the likelihood of seizure freedom after resection, is critical in the treatment of patients with brain tumours.
In addition to some of the causes of epilepsy already mentioned, others include:
Epilepsy affects nearly 50 millions people worldwide and nearly 80% of affected persons live in low and middle income countries. [5]
In Africa, the burden is particularly severe, with an estimated 20 million persons living with the illness, corresponding to nearly 1 in 50 people.[5]. This incidence surpasses the global norm, giving a clear picture of the problems encountered by the continent in controlling this devastating disease.
Several factors contribute to the high burden of epilepsy in Africa. [11] Some of these include:
While modern medicine plays a key part in controlling epilepsy, the situation in Africa stretches well beyond medication and doctor's consultations. Cultural ideas and perceptions greatly impact how individuals and communities comprehend and respond to this neurological illness. Addressing the influence of these cultural issues is vital for improving the lives of persons living with epilepsy in Africa.
Across varied African cultures, the sight of a seizure might inspire dread and confusion.
Misconceptions persist, attributing the events to spiritual imbalances, or ancestral curses, or witchcraft. These ideas can lead to exclusion, blaming, and isolation, forcing those with epilepsy into the shadows.
One horrifying example is the wrongly perceived dread of infection. In a community based study in Uganda, 37% of community members who do not have epilepsy and 39% of those with suspected epilepsy who do not seek care, wrongly believed that epilepsy was contagious by touch. [2] Such belief leads to social marginalization and a denial of fundamental human relationships. The anxiety associated with ostracisation can keep persons from seeking medical care, creating a cycle of unmanaged seizures and poor health consequences.
Shame and secrecy sometimes cloak epilepsy in African societies. The stigma connected with the disease produces a culture of silence, where open talks are eschewed and support networks remain untapped. This can leave individuals feeling alienated and lonely, striving to manage their disease alone.
Tackling stigmas and misunderstandings surrounding epilepsy requires a multi-faceted strategy that incorporates education, awareness raising, and community engagement.
One of the major corrective measures is to convey accurate information regarding epilepsy, its causes, diagnosis and therapy. This may be done through community workshops, educational campaigns, and cooperation with local leaders and influencers.
Educational initiatives should target the general community and also focus on healthcare professionals who treat persons with epilepsy in their practice. By debunking myths and giving evidence-based information, healthcare practitioners would contribute to a more educated and compassionate approach to epilepsy care.
In most Africa countries, epilepsy isn't simply a neurological illness; it's a struggle to access basic healthcare. Millions living with this ailment face a daunting maze of inadequate challenges that include:
Navigating this maze to achieve adequate therapy is a Herculean undertaking, involving resilience and resourcefulness.
Standard approaches to the treatment of epilepsy globally and in Africa, include:
While persons with epilepsy are under therapy to manage their seizures, there might still be occasions where emergency or first aid care is essential. Here's what to do in an emergency
The first step is to recognize that the person is suffering a seizure. This might be hard as there are many types of seizures with diverse symptoms. Some frequent indicators include:
If you encounter someone suffering a seizure, do not panic, Secure your safety first and then the safety of the patient. Move away anything that might cause injury if the individual falls or convulses.
It's a frequent myth that you need to hold someone down during a seizure or put something in their mouth to prevent them from swallowing their tongue. This is not true and can cause harm.
Start timing the seizure from the minute it occurs. This information will be vital for medical experts later.
Generalized Tonic-Clonic Seizures (Grand Mal):
The long term management of epilepsy comprises a variety of therapeutic choices, each designed to fit the particular requirements of individuals living with this neurological disorder.
Medical therapies, notably antiepileptic medications (AEDs), are the cornerstone of epilepsy management. Unfortunately, nearly 60% of African epileptics do not have access to AEDs. [1]
AEDs are aimed at stabilizing electrical activity in the brain, therefore avoiding the incidence of seizures. The selection of a specific AED is a meticulous procedure, taking into account criteria such as the kind of seizures, age, co-existing medical disorders, and potential medication interactions. With several AEDs available, healthcare professionals work closely with patients to discover the best optimal drug that balances efficacy and tolerability. Regrettably, nearly 60% of Africans who need AED are unable to access the drug due to several factors.
In circumstances where epilepsy proves resistant to pharmaceutical therapies, surgical approaches may be considered. Epilepsy surgery includes removing or disconnecting the area of the brain responsible for seizures. This strategy is often examined after a full examination, including video-electroencephalogram (EEG) monitoring and neuroimaging investigations, to locate the specific area of the abnormal brain activity. Challenges abound with respect to epilepsy surgery in Africa [3]
Another non-pharmacological method is Vagus Nerve Stimulation (VNS). This includes implanting a device that stimulates the vagus nerve, a critical participant in controlling different biological systems. VNS has been demonstrated to lower the frequency and severity of seizures, making it a feasible alternative for patients who do not respond effectively to medication or are not ideal candidates for surgery. This option may not be readily available in many epilepsy treatment centres in sub-Saharan Africa.
Diet
Beyond traditional medical treatments, alternative medicines have a role in epilepsy care. These therapies, although not replacing normal medical care, can complement established techniques and increase general well-being.
Among the alternative medicines researched are dietary interventions, with the ketogenic diet being a famous example. This high-fat, low-carbohydrate diet has showed benefit in lowering seizures, particularly in specific pediatric groups.
Behaviour therapy
Behavioral therapy, like biofeedback and relaxation methods, may be used to assist patients manage stress and minimize seizure triggers. While the scientific evidence supporting the efficacy of alternative medicines differs, some individuals find them useful in combination with medical therapy.
1. Limited Healthcare Infrastructure: Many locations in Africa have issues connected to limited healthcare infrastructure, including a lack of medical facilities, skilled experts, and crucial resources for epilepsy diagnosis and treatment.
2. Access hurdles: The vast and sometimes inaccessible physical settings of Africa can cause considerable hurdles to getting healthcare. Individuals living in rural locations may have restricted transportation alternatives, making it difficult to attend healthcare facilities for routine check-ups and medication management.
3. Financial Constraints: Affordability of healthcare treatments is a substantial hurdle in many African nations. The cost of drugs, diagnostic testing, and expert consultations can be prohibitive, especially for persons with low financial resources. [1]
4. Stigma and Cultural Beliefs: Societal stigmas and cultural beliefs around epilepsy might hinder persons from obtaining medical assistance. Misconceptions and fear of prejudice may lead to delayed or poor treatment, worsening the effects of the disease.
5. Lack of epilepsy knowledge and awareness of the biological basis of the disorder: Limited understanding of epilepsy among both the general public and healthcare practitioners can result in delayed diagnosis and ineffective treatment. Education initiatives are needed to debunk misunderstandings and raise knowledge of the illness.
There is no specific risk factor associated with being an African epileptic. Epilepsy can be caused by several factors, including genetics, brain injuries, infections, and stroke. While some genetic variations might be more prevalent in certain populations, prevention strategies should focus on addressing manageable risk factors and removing the barriers to early diagnosis and care of the epileptic.
Epilepsy in Africa presents unique challenges, including cultural stigmas, genetic predispositions, and limited access to healthcare. Addressing these challenges requires a comprehensive and multidimensional approach, involving community education, improved healthcare infrastructure, and the integration of alternative therapies. By fostering understanding, reducing stigmas, and enhancing access to quality care at an affordable cost, it is possible to improve the lives of individuals living with epilepsy in Africa and contribute to global efforts in combating this neurological disorder.
Epilepsy affects individuals differently, depending on the type and severity of seizures. Some people experience mild episodes with brief loss of awareness, while others have more severe seizures with loss of consciousness and convulsions. Epilepsy can also impact emotional well-being, educational achievements, social interactions, and daily activities.
Yes, many people with epilepsy live fulfilling and productive lives. With proper medication and management strategies, seizures can be controlled effectively. They can pursue education, careers, relationships, and all other aspects of life they desire. Access to healthcare, support systems, and community education and support are crucial for achieving this.
Epilepsy shouldn't deter a woman from wanting to have children. Pre-conception counseling with a skilled healthcare professional specializing in epilepsy and pregnancy is essential. With careful planning and adjustments tof medications as needed, many women with epilepsy have healthy pregnancies and deliveries.
While rare, in some cases, severe or prolonged seizures can be fatal. With proper diagnosis, treatment, and management, the risk of death from epilepsy is very low. Regular follow-up with healthcare professionals and adhering to treatment plans are key to minimizing risks.
1. Ba-Diop A, Marin B, Druet-Cabanac M, Ngoungou EB, Newton CR, Preux PM. Epidemiology, causes, and treatment of epilepsy in sub-Saharan Africa. Lancet Neurol. 2014 Oct;13(10):1029-44. doi: 10.1016/S1474-4422(14)70114-0.
2. Kaddumukasa M, Smith PJ, Kaddumukasa MN, Kajumba M, Almojuela A, Bobholz S, Chakraborty P, Sinha DD, Nakasujja N, Kakooza-Mwesige A, Gualtieri A, Onuoha E, Nakku J, Sanchez N, Muhumuza C, Fuller AT, Haglund MM, Koltai DC. Epilepsy beliefs and misconceptions among patient and community samples in Uganda. Epilepsy Behav. 2021 Jan;114(Pt B):107300. doi: 10.1016/j.yebeh.2020.107300.
3. Kissani N, Nafia S, El Khiat A, Bengamara N, Maiga Y, Sogoba Y, Ahmed A Ibrahim E, Agbetou M, Massi Daniel G, Assogba K, Matar Gaye N, Kuate Tegueu C, Hussein Ragab A, Razafimahefa J, Wilmshurst J, Naidoo A, Jabang JN, Watila M. Epilepsy surgery in Africa: state of the art and challenges. Epilepsy Behav. 2021 May;118:107910. doi: 10.1016/j.yebeh.2021.107910. [Abstract]
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5. World Health Organization (WHO) Epilepsy. [Internet. 2023, February 9)] Accessed January 20, 2024. Available from:. https://www.who.int/news-room/fact-sheets/detail/epilepsy
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8. Bozzi Y, Casarosa S, Caleo M. Epilepsy as a neurodevelopmental disorder. Front Psychiatry. 2012 Mar 19;3:19. doi: 10.3389/fpsyt.2012.00019
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Published: January 30 2024
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