Professor Paul Nwani, the neurologist at the Nnamdi Azikiwe University Teaching Hospital, Nnewi, is the President of the Nigerian League against Epilepsy. In this interview with Sade Oguntola, he speaks to epilepsy, a disease highly stigmatized but poorly understood by many in Nigeria.
What is epilepsy? Many assume that it is now rare, how true is this?
Epilepsy is a common neurological disorder and one of the most prevalent non-communicable disorders affecting about 70 million people worldwide. It is a brain disorder characterized by an enduring tendency to generate epileptic seizures. Unfortunately, the chances of the seizure reoccurring are high if the condition is left untreated. Repeated epileptic seizures can damage brain cells and impair their activities, especially when seizures occur during the period when the brain is still under development.
Anything that interrupts the normal connections between nerve cells in the brain can cause a seizure. The signs and or symptoms of seizures depend on where the interruptions occur in the brain. It can range from the mild one that is not readily discernible to an observer to the severe symptoms. This is why, at times, a person comes to the hospital with a complaint, the doctor will say it is a seizure, but the person will argue that it is not because there is no convulsion or the jerking of the body. Not all seizures must be accompanied by jerking of the body.
How is epilepsy diagnosed?
A doctor will make a diagnosis of epilepsy if there is the presence of two or more of such unprovoked seizures, occurring more than 24 hours apart in an individual. However, in certain circumstances, the diagnosis of epilepsy can be made in the presence of one seizure episode if there is supporting laboratory evidence that there is a high chance of the seizure recurring in the individual without treatment. The term unprovoked means that there is no immediate medical condition accounting for the seizure besides the probable brain disorder. For instance, a very high or low blood sugar can lead to a seizure in a person with diabetes. It does not mean the person has epilepsy.
Some think epilepsy is rare these days, but that is not correct. Cases of epilepsy are on the increase worldwide. Moreover, it is also higher in rural than urban areas. Better seizure control of people living with epilepsy (PLWE) in the urban areas also prevents urban dwellers from noticing that epilepsy is still common.
Why does it occur? What are the common causes of epilepsy in Nigeria?
Epilepsy is a brain disorder that is due to insults in the brain that tend to generate abnormal discharges. Some medical conditions or events cause epilepsy. Also, some conditions can increase the likelihood of developing epilepsy, and this varies among the different age groups. In children, common causes and risk factors for epilepsy include childhood infections (meningitis, encephalitis), some viral infections occurring during pregnancy, premature birth, birth trauma, birth asphyxia, congenital malformations and a family history of seizures and a history of seizures in childhood.
Among the youths, infections like HIV, head injuries, substance abuse, including heavy alcohol intake, genetic factors, congenital malformations and family history of seizures rank high as reasons for epilepsy. However, conditions like stroke, brain tumors, neurodegenerative diseases and traumatic brain injuries rank high among the causes and risk factors for epilepsy among older people. In some cases of epilepsy, however, the causes/risk factors are not known.
Currently, an increase in the prevalence of epilepsy among elderly Nigerians is being noticed due to the increasing lifespan and increasing occurrence of stroke and other age-related neurodegenerative diseases in the nation. Also, epilepsy cases are more prevalent in Africa and other developing nations due to the high occurrence of cause and risk factors for epilepsy, including poor accessibility and availability of treatment for epilepsy on the continent.
Read Also: Three headless bodies found in Ondo river
Can individuals outgrow epilepsy?
Yes, it depends on the type of epilepsy. Certain epilepsies have a high chance of remission, especially the idiopathic types. In some epilepsy that start in childhood, the seizure tends to stop with age. However, the concern is the various degrees of brain damage resulting in memory, psychological and social problems and poor quality of life in these individuals if they are not treated and the seizures are not controlled.
There are various treatment options for epilepsy, and the goal of treatment is to achieve seizure freedom. The treatment options include the use of antiepileptic drugs. About 70 percent of epilepsy cases are amenable to the appropriate medication for the seizure type. On average, if the patient is seizure-free for about two years on the medication, the medication can be withdrawn. Most will remain in remission, though some may relapse. Also, in about 30 per cent of cases, the seizures may continue despite medication. In some developed nations, the use of “medical marijuana” is becoming an option for some types of epilepsy. For some types of epilepsy, surgery, dietary therapy, and vagus nerve stimulation are the treatment options. Surgery may be required where epilepsy is caused by conditions like brain tumors or if seizures originate from a specific brain region. Dietary control of epilepsy involves the use of a special diet called the ketogenic diet.
Why is the thinking that epilepsy only affects children wrong?
Epilepsy affects all age groups. The thinking that epilepsy affects only children is changing. This wrong notion stemmed from the fact that epidemiologic data on the prevalence of epilepsy usually show peak age prevalence in persons less than 20 years. Also, the prevalent risk factors and causes of epilepsy affect children mostly. However, with the world aging and an increasing number of elderly persons, other causes of epilepsy common among the elderly are beginning to emerge. Currently, in developed nations, there are two peaks of epilepsy, one among children and the other among the elderly, due to increasing cases of stroke and its survivors, as well as other neurodegenerative disorders.
Is it true that people with epilepsy are mentally ill or intellectually disabled?
No. Epilepsy is a disease of the brain, and there is a history of persons who had epilepsy and made remarkable impacts in all aspects of life. That said, some patients with epilepsy may manifest some form of psychiatric disorders as a result of the disease or as a side effect of some AEDs, while some patients with primary psychiatric and behavioral disorders may also have epileptic seizures.
Epilepsy is a neurological disorder that manifests with seizures; some other features are grouped with seizures to form the various epilepsy syndromes known in medicine. A seizure must be present to have epilepsy. However, not all seizures are due to epilepsy. Seizure can be a symptom of several diseases, ranging from high or low blood sugar in diabetes, excess protein in urine in individuals with chronic kidney disease, to brain infections like meningitis and encephalitis, amongst others. This does not mean that these individuals have epilepsy. In these instances, the seizure is only a sign or symptom of an immediate medical condition.
What are the challenges faced by people living with epilepsy in Nigeria?
The challenges faced by people living with epilepsy in Nigeria are enormous. The perennial challenge of stigmatization and discrimination suffered by people living with epilepsy worldwide still exists in Nigeria. This stigma is in all spheres of life, including in hospitals had resulting in social isolation of the PLWE. Epilepsy stigma is fueled by false traditional and religious beliefs regarding the disorder. People with epilepsy also live with the fear of sudden seizures, which is also a challenge. This is one of the causes of the internalized anticipation of discrimination that the PLWE experience..
Unavailability of anti-epileptic drugs and high cost of the drugs when available also pose a challenge to them, as well as limited access to health care centres with the requisite manpower and facilities for appropriate and adequate epilepsy care. There is a limited number of specialists trained to effectively manage epilepsy in the country. Several non-governmental organizations involved in epilepsy care exist in the country, but government support for people with epilepsy is inadequate.
There is a lot that parents and the entire society have to do in the care of PLWE. There is a need to understand the disorder, do away with many of the myths surrounding the illness and embrace the fact that it is a medical condition amenable to treatment with orthodox medications. When the patient is having epileptic seizures, they should be kept away from harmful objects, objects like a spoon should not be forced into their mouth in a bid to prevent tongue biting, and they should not administer native concoctions made from cow urine to stop seizures. Any seizure patient who will bite the tongue would have done that before the spoon is brought, and cow urine contains substances that can lower blood glucose level, which will instead propagate the seizure and worsen the condition. The first port of call should be the hospital for treatment with orthodox medicine and not herbal treatment or treatment in prayer and healing homes.
Nigerians firmly hold to their religious belief, and we recognize that and also advice our patients to take their medications and pray to God, and avoid taking anything administered orally in the prayer houses and spiritual centers. The contents of some of those substances (for instance, green water) can worsen their condition.
The government has a lot to do to improve the care of people with epilepsy in the nation. This includes the provisions of adequate manpower (training and retraining of professionals and health workers involved in the treatment of epilepsy as well as sponsoring research in the field of epilepsy) and provisions of hospital and health centres equipped to care for PLWE. The government should also ensure the availability and affordability of antiepileptic drugs nationwide.
Government can also support the campaign by NLaE (Nigerian League against Epilepsy) and its affiliate bodies in their effort to increase awareness of the disease among the populace and debunk the myths surrounding the disease. The false traditional and religious beliefs govern not only the health-seeking behaviour of the people with epilepsy and their relatives but also the attitude of the society towards the PLWE. The government can enact and enforce anti-discrimination laws against epilepsy in the country. Last year, the Nigerian League against Epilepsy produced a policy paper on the stand of the League regarding education, driving and employment of persons with epilepsy. Requisite legislation enforcing this policy statement is needed to improve the care and quality of life of people living with epilepsy.
What needs to be done to prevent epilepsy both at the family, community and government levels?
Education of the populace on the risk factors and causes of epilepsy and concerted efforts to reduce these should involve the family, community and the government. Pregnant women should have access to adequate antenatal care and deliveries, childhood infections and parasitic infections like cysticercosis (pork tapeworm) should be controlled, and the menace of substance abuse among the young ones should be curbed by combined community and government efforts. Also, a reduction and management of risk factors of stroke at all levels will reduce the occurrence of stroke and occurrence of epilepsy among the older population.
In many countries, legislation reflects centuries of misunderstanding about epilepsy. What laws in Nigeria infringe on the rights of PLWE that needs to be changed?
The laws that infringe on the rights of PLWE in the past have been repealed in nations. In Nigeria, I am not aware of the existence of such laws today that deny people with epilepsy access to restaurants, theatres, recreational centers and other public buildings. The policy statement by the NLaE also addressed the need to ensure that the rights of the PLWE are not infringed upon.
In the issue of marriage, a lot of intrigues come into play. In a nation like Nigeria, where family ties tend to govern the many issues in marriage, there is no express law that permits the annulment of a marriage on the grounds of epilepsy. However, the law requires consent for the validity of any marriage. For consent to be effective, it must be informed. None of the parties contracting a marriage may deliberately withhold vital information from the other party. The legal experts may argue that epilepsy may form part of such non-disclosures that could vitiate consent in a marriage and render an otherwise valid marriage a nullity. Only a court of competent jurisdiction can make the determination though. However, in practice, we advise our patients to make known their medical conditions to intending suitors or bring them to us to discuss the medical condition with them, and this has worked for some.
The girl-child advocate further called on private companies and non-governmental organisations to create more opportunities…
Adeyanju, who is a VDM lawyer, in an update shared on Friday via X, revealed…
The newly installed Regent of Ijigba Kingdom in Akure South Local Government Area of Ondo…
“While countries like Belgium, Britain, and the United States eliminated malaria decades ago, Nigeria continues…
In the one-hour, eight-minute broadcast, the activist alleged that Natasha offered her N200 million to…
"While we understand and appreciate the full separation of powers, there is always a common…
This website uses cookies.