Shaky ground: epilepsy in Liberia
"WILL I FALL TOMORROW?"
Francis (2nd from right) is being interviewed by RHL Field Coordinator, James Kpangbai. Francis' uncle, Morris, is sitting to his left.
Meet Francis, an epileptic teenager in Liberia
For Francis, a teenager from the village of Nyokolitahun in Liberia, October 5th is a very special day: It will be graduation day for the vocational skills program he has been attending in Kolba City, about 15 miles from his home. Now that the dry season is approaching, travel by foot or motorbike will be easier. He’s looking forward to seeing acquaintances and meeting newcomers.
There’s just one problem: Francis is overcome by a sense of impending despair as the question, “Will I fall tomorrow?" cycles continuously through his mind. He can’t get the fear out of his head.
In Liberia, the terms, ‘fall’, ‘fall down’ or ‘fall out’ all refer to seizures. Epilepsy, a neurological disorder characterized by repetitive seizures, is a non-communicable condition associated with abnormal electrical activity in the brain. When seizures are uncontrolled, epilepsy is disabling. Persons with seizure disorders may experience a warning or ‘aura’ prior to a convulsion, but often there’s no such warning.
One of the most alarming types of seizures is the generalized seizure, or tonic-clonic seizure, which renders a person unconscious, as bodily control is lost and muscles contract violently. Falls commonly occur with generalized seizures, and resultant injuries include lacerations, burns, concussions and fractures. Drowning can occur if a person is in or near water. Seizures can also be complicated by prolonged headaches which adversely affect daily routines. Inadequately controlled epilepsy is also associated with premature death.
Worldwide, approximately 50 million people of all ages live with epilepsy, and epidemiologists are now confirming what has been long suspected: Sub-Saharan Africa has the world’s highest prevalence of epilepsy. Perinatal trauma, inherited disorders, head trauma and infectious diseases, particularly those caused by parasites and bacteria, are some of the conditions associated with the onset of epilepsy.
Seizures can be mitigated through the use of anti-seizure medications. Regular dosing, usually on a daily basis, helps prevent seizures in most cases. However, in the wake of the country’s civil wars, national drug inventories have been insufficient to meet Liberians’ needs for essential medications. There’s also a shortage of medical professionals.
Epilepsy is often accompanied by anxiety and depression, which takes a further toll. Mental health professionals are few and far between in Liberia, and anti-depressants are not commonly available.
In the developing world, societal misconceptions, including the belief that seizures indicate that a person is ‘possessed’ or is to blame for convulsive disorders, often means that individuals with epilepsy are considered contagious and hence stigmatized, isolated and marginalized. For children and youth with epilepsy, this is deeply troubling. Kids want to fit in with peers, rather than stand out. For people with seizure disorders, societal exclusion and isolation further exacerbate anxiety and depression.
Education is adversely affected, as academic performance and school attendance decline. Students may require days to recover following a generalized seizure while prolonged headaches make studying difficult.
Around noon on graduation day, Francis is standing with his uncle, Morris, at the Restore Hope: Liberia (RHL) vocational education center when he developed a seizure and fell to the ground. Onlookers surrounded Francis, while his uncle knelt beside him. RHL nurse Gladys Zarbay was alerted, and went to Francis, placing him safely on his side as Morris explained how Francis ran out of his anti-seizure medication the previous month because of a stock-out at the hospital.
Gladys promptly checked with the hospital: Still no anticonvulsants. Ultimately, she was able to purchase Francis’s anti-seizure medication at a small roadside shop in Kolba City.
When Francis was assessed two weeks ago, he was not feeling well. He was depressed and only reluctantly communicative; he held his head between his hands. It had been a particularly difficult week for Francis, who also suffered a bout with malaria.
Currently, Francis is taking his anti-seizure medication.
This week, in November 2020, Francis is feeling better and regularly taking his anti-seizure medication. But, he’d like to feel well – well enough to imagine that wonderful things are in store for him tomorrow, next week and next year - without the dread of seizures.
Francis, one of many orphans in Nyokolitahun, continues to try to cope with life’s challenges. And while he’s grateful for his grandfather and RHL, he longs for relief from seizures, anxiety and depression. He doesn’t want to succumb to despair. His prayer is to experience wellness, confidence, societal inclusion and the emboldened vision of wonderful tomorrows.
What RHL is doing (and would like to do more of) to help persons with epilepsy:
Provide public health education to reduce stigmatization
Assure access to anti-seizure medications
Assure access to mental health drugs and services when indicated
Provide extracurricular tutoring
Advocate for persons living with epilepsy and mental health disorders
Advocate for safe pregnancies and deliveries to reduce perinatal neurologic trauma
Advocate for prevention/control and treatment of parasitic diseases
