Purple day to create awareness about epilepsy happened all over the World on Monday 26th March. We were not left out in Nigeria and many centres in the country participated in the activities. A road march occurred in Benin: organised by Angie Epilepsy Foundation. This was in addition to the activities lined up by Dr Bunmi Ogunrin, consultant neurologist, at the University of Benin Teaching Hospital.
In Abuja, the efforts were also monumental though on a very low budget. We started in the preceding week with a radio show. Hosted by Wazobia 99.5 FM, Abuja, we discussed the PURPLE DAY event with Willy Willy (famous radio DJ) live on radio on Wednesday. People were informed about the coming event and asked to wear purple on the day in support. The radio station also carried the event on their news bulletin during the later part of the week. The Guardian, Compass, the Road and Thisday newspapers carried featured article in the week before Purple Day. The articles were highly enlightening and may people made comments about them.
On Purple day, Dr Biodun Ogungbo, consultant neurosurgeon, Cedarcrest Hospital, Abuja and Dr Emmanuel Obehighe, consultant neurologist, Federal Medical Centre, Keffi, appeared live on the show Kaakaki, on the Africa Independent Television network (AIT, Daar Communications Ltd). The early morning show kicked off at 7 am and we talked about epilepsy, the causes, the treatment, myths and misconceptions. The theme of the celebrations in Abuja was “creating awareness about epilepsy and how to look after someone having a seizure”. Leaflets were published with instructions on what to do.
The community was therefore well sensitized to the event.
Let us recap some of the information circulated about epilepsy.
What is epilepsy?
Epilepsy is a recurring outward manifestation of a problem with the brain. The medical definition of epilepsy is ‘repeated seizures or convulsions (or fits) due to a brain problem’. It is due to something irritating the brain of the sufferer. It is personal and individual to that person and cannot be transmitted to another person. It is also not caused by demons or evil spirits.
Defining Epilepsy: a disease or a disorder?
Epilepsy is not a disease. It is a disorder. A seizure is a symptom rather than a diagnosis. All brains will convulse if given sufficient provocation, as in electroconvulsive therapy (ECT). Perhaps the best definition is the tendency of recurrent fits. A frequently used diagnostic criterion for epilepsy is two or more seizures within a year. This excludes an isolated seizure due to, for example, hypoglycaemia (low blood sugar).
How does epilepsy occur?
The brain is made up of billions of nerve cells and connections which work together in a delicate pattern to move body muscles and understand whatever the body is experiencing. The normal brain is constantly producing electrical rhythms in an orderly way. However, a short circuiting of the wiring can lead to overloading of the brain causing it to stop functioning correctly and everything can become jumbled up. This misfiring can last a few seconds or be prolonged and is called a seizure or fit. Many fits is called epilepsy and someone who is having repeated fits can be epileptic. Perhaps it is better to refer to epilepsy as a seizure disorder.
What causes seizure disorder?
Anything which can cause scarring in the brain and therefore a break in the connection of nerve cells to each other can cause epilepsy. The disorder can be congenital (a baby is born with it) or acquired (a person develops it after birth). It can have an obvious direct cause such as a brain tumour, head injury, stroke, and brain infection; or have no clear cause. In fact for up to 50% of patients with a seizure disorder there is no obvious cause. It is important to know that an isolated, single seizure does not mean a person has epilepsy. Seizure disorder by definition is a chronic condition with recurring seizures. Many people can have a one-time seizure because they were very dehydrated, or had abnormal levels of substances in the blood (e.g. glucose, magnesium, calcium).
The different seizures in different age groups
The most likely problem in the brain in epilepsy varies with the age when the seizures start, e.g. congenital abnormalities (abnormal brain development that a baby was born with) and brain infections occur more in infancy, trauma (head injury) occurs more in adolescence, and in old age, brain tumors and stroke are more frequent. Febrile complex seizures at age 6 months to 5 years and lasting more than 10 minutes are associated with the development of epilepsy in later life, in some patients.
Who can have a seizure?
Anyone can have a seizure. It is something that is happening to the brain of the individual person and can be caused by many things. It can happen to the rich, poor, educated or illiterate and people of all ages. It happens in all countries in the World and affects both white and black people. It is no more common here in Nigeria than anywhere else in the World. Children born with normal brains can develop epilepsy due to lack of oxygen, fever, jaundice and other insults on their young brain.
What does a seizure (epileptic fit) look like?
It all depends on the type of epilepsy, but there are 3 common manifestations. There is the simple partial type in which a part of the brain is occasionally disrupted, manifesting in the form of repeated movements of a part of the body, but the person does not lose consciousness and is fully aware of what is going on. Then there is the complex partial type, in which a part of the brain is occasionally disrupted, manifesting in the form of decreased awareness with or without repeated movements of a part of the body. Finally, there is the generalized type, in which the entire brain is disrupted at once and these patients lose consciousness frequently accompanied by jerking around, foaming at the mouth, and involuntarily urinating on themselves. A seizure can start off as complex partial and then become generalized.
About 90% of seizures are self-limiting lasting seconds to no more than 5 minutes. After a complex or generalized seizure has ended, patients can be disoriented or sleepy for several minutes thereafter. If a seizure lasts for more than 10 minutes, that is unusual and is a reason to take the patient to the hospital as quickly as possible. Self-limiting seizures do not cause brain damage, but prolonged seizures certainly can, and so it is important for the patient to get to the hospital where drugs can be administered to arrest the seizure promptly.
How should people treat someone having a seizure?
The best management for the patient at the time of a fit is to make sure they do not come to harm or injure themselves during the period of loss of consciousness. Move objects that can harm the person, out of the way. If possible, place a pillow under the person’s head so that the head doesn’t bang against the floor causing injury. Keep calm and try not to panic. Let the seizure run its course and do not hold them down. If possible move them to a comfortable place and let them sleep or at least have a good rest once the seizure is over. Please check to make sure they are breathing well.
If the seizure does not stop, or it stops then keeps recurring without the person waking up in between episodes, please get medical help immediately. Take the person to the nearest hospital where they can be helped.
What you should NOT do?
We have heard of some communities where burning the feet of the sufferer is supposed to be helpful! Please do not do this. Also, the practice of putting a stick or spoon in their mouth is not necessary and can be damaging. Finally, in some communities, various concoctions (drugs, alcohol and even urine in some communities) are poured down the throat of the sufferer. This can lead to aspiration, choking, pneumonia and death.
Please do not pour anything into the mouth of someone having a convulsion, not even tablets. Since, they may be unconscious at the time they can choke on drugs and concoctions.
How is epilepsy diagnosed?
The doctor needs to talk to the patient, relatives and any eye witness and get a full story of the condition. This is the most important investigation. Often, many of the types of epilepsy and the possible causes can be diagnosed from the history alone. The doctor can also order blood tests looking at the general condition of the patient and some other specific tests. Two important investigations are a brain scan (CT or MRI scan) and an EEG (electro encephalogram). The brain scan shows the exact pattern and structure of the brain and can detect abnormal areas. The EEG shows the electrical activity of the brain and can detect where the electrical signals are getting jumbled up. It can also show whether the electrical problem is located in a specific part of the brain alone or all over the brain. Finally, there are more sophisticated tests that can be performed as necessary. The doctor will do whatever tests are necessary to highlight the cause of the epilepsy.
Churches, mosques, herbalists and traditional healers cannot diagnose nor treat epilepsy. This is a fact. Many traditional healers prey on the psychology of the patients and thrive on the misery of the family. Seizures can be controlled if you take your medications regularly and combine that with prayers.
What are the treatment options available to patients?
Epilepsy can be treated, controlled and rarely, cured. Epilepsy can be well controlled by medications. These drugs can reduce the frequency and severity of the seizures by keeping the nerve cells quiet and making it difficult for them to short circuit. Sometimes, a patient may need to be on more than one seizure medication to control epilepsy. In fact, epilepsy is not necessarily a lifelong condition. Many people who have been seizure free for three or four years have their medications carefully withdrawn under close medical supervision and remain free for the rest of their lives. Surgery can also be successful in eliminating certain types of seizures.
Can epilepsy be cured?
Epilepsy can be cured depending on the cause. For example, if it is due to a brain tumour or stroke, it may be treated and cured once the stroke or tumour has been removed from the brain. Most types of epilepsy however, can only be treated and controlled, not cured. Let us repeat one statement: Seizures can be controlled if you take your medications regularly and combine that with prayers.
Are patients treated well in Nigeria?
Many patients are treated by general practitioners and paediatricians. Only a small number are treated by neurologists or neurosurgeons. There are about 20 to 25 different types of drugs available to treat epilepsy. With such, the treatment choices are wide and a careful selection is important. A doctor has to choose the drug best for the particular type of seizure the patient has. The drug must then be given in the right format and dose for the person. Too often, the dosage is low and so the person continues to have fits.
Of course, some patients stop taking their drugs or miss a dose here and there. Others also visit churches and mosques, traditional healers and spiritual herbalists looking for salvation. They mix their drugs with other concoctions and this leads to poor seizure control.
Are the drugs within reach and what are the cost implications?
Many of the drugs are available in Nigeria and there are many reputable local and international manufacturers (Novartis and Glaxo Smith Kline). The main drugs often used (Carbamazepine, Sodium Valproate, Phenytoin, Phenobarbitone) are available and may cost up to N300 per day for effective treatment. More expensive drugs (Gabapentin, Topiramate, Leveteracipam ) may be necessary if control is not adequate. Many of the very expensive drugs are not easily obtained in Nigeria. Other ways to treat epilepsy include surgery. Treating the cause by removing the abnormality (e.g. scar or brain tumour) may lead to cure. Surgery can be expensive. Financial cost for surgery could be as low as N100, 000 to as high as N1m or more. We have certain specialised operations that can be designed for the individual patient including the use of implants that stop seizures inserted into the brain and on nerves in the neck.
What are the myths and misconceptions about epilepsy?
- Many people think that epilepsy is due to a spiritual attack and that the demon must be cast out of the patient. This is incorrect. Unfortunately because demons have been thought responsible, they are often ‘beaten’ out of sufferers in many churches and herbalist homes, needlessly subjecting several patients to grievous bodily harm and even death.
- Some say that epilepsy is contagious and can spread from one person to another. This is also not correct. It has never been and it will never be. You cannot contract epilepsy by touching the sufferer or coming in contact with their saliva. It is not an infection and is not caused by a virus or germ.
- Epilepsy is also not a mental illness. Seizures are mainly a symptom that there is a physical problem, like a scar, on the brain. Some people with epilepsy are extremely clever, others are of average intelligence and some have learning difficulties. Just like normal people in the population, really.
- Epilepsy is not a bar to success in life. Many people with epilepsy enjoy highly successful lives. The problem is often other people who put them down.
- Epilepsy is not generally an inherited condition. Although, there can be a genetic predisposition, more often than not, there is no family history of epilepsy.
The famous question: Is epilepsy contagious?
Epilepsy is not contagious. That is a fact. Epilepsy is also not a disease. It is the symptom of other things that is wrong with the brain. Medications work to control the seizures if used properly. The choice of drug and the dosage must be correct. Also, do not sstop taking the drugs unless advised by a knowledge able doctor. The trouble is that the parents of the children with epilepsy are not patient enough to allow the drugs to work. They expect miracles, attend religious places and get bad advice.
Add prayers to the treatment BUT do not stop the treatment.
How can we position our health system to better respond to epilepsy?
Anyone can be affected by epilepsy. We need to create more awareness about nature of epilepsy and its capacity to be treated. Policy makers at all levels of government should ensure that the drugs are more widely available and cheaper. Many patients stop taking their medications because of the poor access to and the high cost of drugs, thereby leading to seizure recurrence. Finally, given the paucity of neurologists and neurosurgeons in Nigeria, efforts must be made to train more specialists and position them in all the six geopolitical zones for wider care coverage.
How can you get help? Please ask the following people and organisations:
(1): Dr Biodun Ogungbo, MBBS, FRCS, FRCS (SN), MSc
Consultant Neurosurgeon, Cedarcrest Hospital, Abuja
Telephone: 07082350074
Information Hotline: 08122221616
Email: ogungbo@btinternet.com
Web: www.linkedin.com/in/ogungbo
(2): Dr Emmanuel Obehighe
Consultant Neurologist, Federal Medical Centre, Keffi
Telephone: 08033855296
(3): International League Against Epilepsy (Nigerian Chapter)
Secretariat: Neurology Unit, Dept. of Medicine, University of Nigeria Teaching Hospital (UNTH) Enugu. P.M.B. 01129, Enugu.
Secretary's number: 08056435102
(4): Angie Epilepsy Foundation (Benin)
#14B Asoro Street, Off Sokponba Road, Benin City, Edo State, Nigeria
Tel: 07033138244, 07059306368
An NGO in Benin doing a lot for epilepsy: They are at the forefront of ensuring hope for people with epilepsy. The AIMS AND OBJECTIVES are as follows:
- Creating awareness on the causes and dangers of epilepsy and to provide treatment to those suffering it – that cannot afford it.
- To provide selfless, non-discriminating service to them.
- To encourage and boost the self-esteem of the abandoned ones in the society.
- To foster hope and love among parents whose children are suffering from epilepsy.
Please DONATE to the foundation. (Angela Asemota: UBA: Benin: Account 1015980954
