Epilepsy: The stigma, misconception and facts
Suddenly, Akosua (not her real name) began to feel dizzy on the mini-bus (trotro) which was awaiting more passengers. Her body became stiff, her head slumped backwards and she started shaking uncontrollably.
Some passengers shouted at top of their voices “Jesus! Jesus!” while others rebuked her for being possessed by an evil spirit.
A Good Samaritan came around and helped Akosua relax and regain consciousness within two minutes, to avoid life-threatening injuries.
Akosua’s experience is one of the many situations of persons living with epilepsy (PLWE) in the country.
Stigma, marginalisation, traumas, bruises and fractures characterise days they have episodes.
Globally, over 65 million individuals suffer from epilepsy. In Ghana, the prevalence is believed to be between one and two percent of the total population. However, doctors, nurses, and educators tend to have limited knowledge of the problem, which could result in subpar management of the disorder and inadequate diagnosis, treatment, and care.
This article aims to inform readers about the sickness as an attempt to dispel ambiguities and offer some details on therapies.
BACKGROUND
Epilepsy is a chronic noncommunicable disease of the brain characterized by recurrent seizures, which are brief episodes of involuntary movement that may involve a part of the body (partial) or the entire body (generalised) and are sometimes accompanied by loss of consciousness and control of bowel or bladder function.
According to research by Abu-Bonsrah et al., 2022, Ghana has 11 hospitals, roughly 25 consultant neurosurgeons and eight neurosurgical trainees (from two training centres). This workforce density equates to one neurosurgeon for every 1,240,000 patients.
Care is sometimes delayed for months or even years because of inadequate number of neurologists and neurosurgeons to provide neurosurgical care, particularly for non – traumatic disorders.
Since the 1960s, neurosurgical care has advanced significantly in Ghana. However, considerable hurdles remain for the neurosurgical community. Removing these barriers to care will necessitate system-wide changes that will allow neurosurgical care to be prioritised within country’s health-care system.
STATISTICS
Each year, epilepsy affects an estimated five million people worldwide. According to estimates, epilepsy affects 49 out of every 100,000 people in high-income nations. This number can reach 139 per 100,000 in low- and middle-income nations. This is most likely due to the increased risk of endemic diseases such as malaria or neurocysticercosis; the increased frequency of road traffic accidents; birth-related injuries; and disparities in medical infrastructure, the availability of preventative health programmes, and accessible care. Nearly 80 per cent of epilepsy sufferers reside in low- and middle-income nations.
Last year, the Mental Health Authority in Ghana registered around 18,506 epilepsy cases. It is vital to highlight that the number of epileptic patients in Ghana could be higher due to poverty and its attribution to the spiritual.
SYMPTOMS, CAUSES AND TREATMENT
Seizures have different characteristics depending on where the disruption begins in the brain and how far it spreads.
Temporary symptoms include loss of awareness or consciousness, impairments in movement, mood, or other cognitive processes, as well as changes of sense (including vision, hearing, and taste).
Both physical issues (such as fractures and bruising from seizures) and psychological issues like anxiety and sadness are more common in people with epilepsy. Similarly, the risk of premature death in them is up to three times higher than in the general population, with low- and middle-income nations and rural areas having the highest rates of early mortality.
Many of the epilepsy-related causes of death, particularly in low- and middle-income nations like falls, drowning, burns, and extended seizures are potentially avoidable.
There are no known major causes of epilepsy in a person, despite the possibility that underlying medical conditions could do so.
There are types of epilepsy, including structural, genetic, infectious, metabolic, immunological, and unknown.
Currently, available forms of treatment for the disorder include medicines called anti-epileptic drugs (AEDs); surgery to remove a small part of the brain that’s causing the seizures; a procedure to put a small electrical device inside the body to help control seizures; and a special diet (ketogenic diet) that can help control seizures, according to the Director, Institutional Care Division of Ghana Health Service, Dr Samuel Kaba Akoriyea.
Also, Dr Akoriyea, who doubles as a Consultant Neurosurgeon and Public Health Physician, emphasised that PLWE needed to identify their triggers and take the necessary measures to avoid them.
The triggers, he said, may include “missed medication, lack of sleep, stress, alcohol, menstruation and including flashing lights.”
He debunked rumours that putting a spoon in the mouth of PLWE during a seizure would stabilise them as they would rather cause injuries to their teeth and other parts of their mouth.
“You should focus on clearing away any hazardous objects, protecting their head, and loosening any tight clothing around their neck. Keeping track of the time the seizure started and its duration can also be helpful in providing information to their healthcare provider,” he explained.
He underscored the need to seek urgent medical care when a seizures lasts more than five minutes or occurs for the first time.
It is important to note that some people need treatment for life, whilst others could stop treatment when their seizures stop or could identify their seizure triggers and avoid them.
In the light of all that, a patient is required to see a neurologist, who performs an electroencephalogram (EEG) as part of the diagnosis before treatment but both neurologists and EEG machines are in short supply in the country, leaving PLWEs at a disadvantage.
STIGMA
One of the common factors that influences people’s decisions not to seek immediate medical attention is stigma. Beliefs and customs related to epilepsy are one of the biggest obstacles to managing epilepsy in Ghana.
According to certain traditional healers in Ghana, epilepsy can be identified and treated spiritually using exorcism and other customary procedures.
People think that epileptics are actually possessed and that bad spirits are to blame for their condition.
These beliefs and attitudes concerning epilepsy and PLWE result in patient stigmatization and marginalization. This must change for the appropriate action because the ailment is treatable.
Stigmatization makes patients struggle to get integrated into the society. They frequently find themselves jobless, have reduced access to education, and end up burdening their families financially. The majority of patients are unable to find long-term partners to start families on their own.
PSYCHOLOGICAL IMPLICATIONS
A resident psychiatric at the Accra Psychiatric Hospital, Rev. Dr Joseph Kofi Aidoo, explained that the stigmatisation of PLWE them develop low self-esteem, depression, anxiety disorders, social disorders, and suicidal tendencies.
Dr Aidoo thus stressed the need for constant education about all forms of mental illness, especially epilepsy, as it was not caused by demons, evil spirits and family curses as rumoured in our traditional setting.
STAKEHOLDER EFFORTS
Various stakeholders have contributed their quota towards the total elimination of the disease.
In 1997, the Global Campaign Against Epilepsy (GCAE) was formed as a joint initiative between the International League Against Epilepsy and the International Bureau of Epilepsy and the World Health Organisation (WHO). The WHO in 2012 launched a programme on reducing the epilepsy treatment gap, with the aim of improving access to epilepsy care and services in low- and middle-income countries.
There are also private institutions such as the Purple Point Neurodiagnostic (PPN) Centre-Ghana, students of Harvard on the Rose Service Learning fellowship, as well as the government, which has enrolled several Anti-Epileptic Drugs onto the National Health Insurance Scheme to bridge the treatment gap.
WAY FORWARD
In Ghana, neurosurgical care has come a long way since the 1960s but still encounters obstacles. Therefore, systemic adjustments must be made to permit the Ghanaian healthcare system to prioritise neurosurgical care.
More efforts need to be made with the cooperation of both local and outside stakeholders to cover more ground for epileptic care.
It is important that medical professionals and the general population are well-informed about epilepsy.
BY JESSEL LARTEY THERSON-COFIE
