The epilepsy treatment gap'the disparity between those in need of treatment and those receiving it'remains an alarming 80% to 90% globally, with significant regional variations. According to the World Health Organization (WHO), approximately 50 million people worldwide live with epilepsy, the vast majority residing in low-income regions such as sub-Saharan Africa.
Professor Dali Magazi member of the Neurological Association of South Africa stresses during Epilepsy Week which runs until 16 February, the urgency of addressing epilepsy on multiple fronts. The burden of epilepsy is particularly severe in poorer regions, where access to diagnosis and treatment remains limited. By improving awareness and accessibility to treatment, we can significantly improve the quality of life for those affected," he states.
He says that studies show that in low and middle - income countries 75% of epilepsy patients lack access to effective and low-cost antiseizure medications which limits the success rate in curbing the occurrence of a second seizure.
In addition, lack of neurologists, limited research and poor resource management contribute to a lack of understanding and defining the condition, which leads to misdiagnosis or lack of treatment."
Beyond medical concerns, epilepsy carries significant social implications, including stigma, bullying, job discrimination and relationship challenges.
The stigma associated with epilepsy can be just as damaging as the seizures themselves," says Prof Magazi. It is not uncommon for people in both urban and rural communities to believe that those with epilepsy are possessed by demons or are bewitched."
This misinformation has a substantial impact on patients seeking medical assistance and leads to isolation, abandonment by their community and exclusion from education and employment opportunities. It can lead to distress, depression, a sense of helplessness and being ashamed."
Prof Magazi explains the complicated nature of epilepsy: An intricate balance between electrical and chemical impulses sustains life and allows interaction with our environment. We need the electrical network housed within the brain, composed of neurons and supporting structures to survive. When disrupted, it can lead to conditions like paralysis or seizures."
Just like a swallow doesnt a summer make, a seizure is not an exact equivalent to epilepsy. A myriad of causes for seizures can be reversed in the immediate in which case, the diagnosis would just be a provoked seizure episode. Examples of such causes include a low glucose and various other salt concentration disturbances in the blood or even a triggering infection. Having dealt with the underlying cause, there would be no need for long-term treatment like would ordinarily be the case with epilepsy."
He says that it is the recurrence of seizures without an immediate reversible cause that makes for the diagnosis of epilepsy. The International League Against Epilepsy (ILAE) has recently refined diagnostic criteria, allowing for a single seizure to be classified as epilepsy if the risk of recurrence exceeds 60%'a determination made through clinical evaluation, brain imaging, and electroencephalograms (EEG)."
Epilepsy manifests in diverse ways, categorised into four primary types: motor (muscle jerks, stiffness, or loss of muscle tone), sensory (loss of sensation in a body part), psychic (confusion that is itself a seizure rather than an aftermath), and autonomic (manifesting as abdominal discomfort or palpitations). This diversity extends to causes, treatment responses, and prognosis.
Epilepsy is not a one-size-fits-all condition," says Prof Magazi. There are different types, different triggers, and different responses to treatment. This is why we now talk about "epilepsies" rather than just epilepsy."
Certain childhood epilepsy syndromes can be misinterpreted. For example, absence seizures'brief, frequent episodes of unconsciousness'are often mistaken for daydreaming, potentially leading to declining school performance. Fortunately, these are highly treatable and tend to resolve by adolescence," Prof Magazi notes. An EEG can help confirm the diagnosis, ensuring that the child receives the appropriate treatment early on."
Epilepsy can be caused by various factors, including head trauma, strokes, meningitis, and autoimmune disorders. Understanding the cause is crucial," Prof Magazi explains. It allows us to tailor treatment strategies, improving patient outcomes and quality of life."
Medication adherence is a critical aspect of epilepsy management. Stopping or irregularly taking epilepsy medication significantly increases the risk of status epilepticus'a prolonged seizure that requires emergency medical intervention," warns Prof Magazi. This can be life-threatening and often requires intensive care."
If a patient continues to experience seizures despite optimal treatment with two appropriately chosen medications, their condition is classified as refractory epilepsy. In these cases, we explore alternative interventions, including ketogenic diets (for children), nerve stimulation or surgery," says Prof Magazi. While epilepsy surgery is available in South Africa, it is limited to a few specialised centers."
External factors such as drug interactions, psychological stress, menstrual cycles and infections can also influence seizure frequency. Being aware of these triggers can prevent unnecessary medication adjustments," Prof Magazi advises. Patients and caregivers should work closely with their healthcare providers to identify and manage these factors effectively."
Prof Magazi says psychogenic seizures could be a cry out for help. In some cases, what appears to be epilepsy may be psychological distress manifesting as pseudo-seizures, often linked to trauma or abuse. Patience and compassionate evaluation are crucial. Family members recording seizures on mobile phones can also be an invaluable tool for accurate diagnosis."
Community support programs play a vital role in reducing isolation and encouraging inclusivity. Organisations such as Epilepsy South Africa do incredible work in providing care, particularly for those with additional mental health challenges," Prof Magazi notes. Their emblem, a candle flame, is a powerful reminder that epilepsy does not have to overshadow a persons life."
There are many inspiring examples of individuals who have thrived despite their epilepsy diagnosis. Take Marion Clignet, for instance," Magazi shares. She was diagnosed with epilepsy at 22 but went on to win five gold medals as a world cycling champion. Her story is a testament to what is possible with the right support and determination."