Purple day to create awareness about epilepsy

Doctors are concerned about the management of Epilepsy in Nigeria: hence the issue would feature prominently at a forthcoming news conference organized by the Epilepsy Association of Nigeria. This is part of activities to mark the WORLD EPILEPSY DAY on March 26^th 2012.  The day will be celebrated in collaboration with the Nigerian Society for Neurological Sciences and the Angie Epilepsy Trust.

The doctors will explain more about epilepsy and argue that Nigeria may not be able to improve the lives of patients with epilepsy, unless it is ready to do 3 things: 

1: increase public awareness about epilepsy,

2: reduce the cost and improve availability of anti epilepsy drugs and

3:  increase the number and improve access to specialists available in the country.

What is epilepsy?

Epilepsy is truly best regarded as a disorder of the brain and can be caused by many diseases. The medical definition of epilepsy is ‘repeated seizures or convulsions (or fits) due to a brain problem’. This means that the seizures originate from the brain.

How does epilepsy occur?
The brain is made up of nerves which we can refer to as electric wires. These wires connect together in a delicate pattern to move the muscles and understand whatever the body is experiencing. 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.

Anything which can cause scaring on the brain and therefore a break in the connection of nerves to each other can cause epilepsy. For example, head injury can lead to damage to nerves and the person can then have a seizure. Brain tumours also damage the nerves and can cause epilepsy.

Epilepsy can be congenital (the baby is born with it) or acquired (the person develops it after birth). It can have a named cause such as an obvious abnormality of the brain or brain tumour, head injury, stroke, bleeding in the brain and meningitis. Epilepsy can also have no clear cause for it (idiopathic, which means ‘unknown’). It is easier to explain to people that a particular disease such as a stroke or brain tumour is the cause but much more difficult to make them understand that it simply happened without a clear cause or demonstrable disease.

There are different names for different types of epilepsy and some types are also named after the part of the brain affected. Epilepsy can be simple, partial or complex. Simple epilepsy means that it is not too disruptive and does not disturb the life of the sufferer too much. Partial means that it affects maybe just a part of the body and may not lead to unconsciousness. Complex is bad and leads to loss of consciousness with disruption of the life of the person.

Some seizures, known as generalised seizures, affect the whole brain and lead to loss of consciousness. There are other rare types of seizures, including atonic, when someone suddenly goes limp and falls to the ground, but recovers afterwards. Another is called myoclonic, a very brief seizure which involves a muscle jerk such as a nodding of the head or jerk of the arm.

An isolated, single seizure does not constitute epilepsy. Also, there are other diseases such as imbalance of sugar levels in the body (diabetes), that can cause someone to have a seizure but this is clearly not epilepsy as it is not originating from the brain.

Epilepsy can happen to anybody and even people who feel perfectly healthy like you and I can still suffer from epilepsy. Epilepsy is not selective and can affect anyone and at any time. It is therefore something that we all should learn about and be clear as to the possible reasons why some people have epilepsy. It should allow us to be more sympathetic to sufferers.

What are the myths and misconceptions about epilepsy?

Some people believe that epilepsy is due to a spiritual attack and that the demon must be cast out of the patient. Needless to say, this is irrespective of educational background or level in the society. Educated and even well travelled people also fall for this big misconception.

Some of the patients have been to church, mosques, spiritual healers and herbalists and of course numerous hospitals looking for an explanation and treatment. Demons have been thought responsible and therefore ‘beaten’ out of sufferers in many churches and herbalist homes, by unskilled people. In this regard, many patients have been subjected to massive cruelty and even death.

Epilepsy is not contagious. 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 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 does not have to be a bar to success in life. Many people with epilepsy enjoy highly successful lives.

Epilepsy is not normally an inherited condition. It can be genetically inherited but more often there is no family history. As mentioned before it can happen to anybody and at anytime. It can be because of infection such as meningitis. This is an inflammation of the lining of the brain.  

What are the treatment options available to patients?

Epilepsy is not always 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.

Epilepsy can be prevented, treated, controlled and rarely, cured. The easiest and most important treatment is prevention. The most important way to prevent epilepsy is to offer early drug treatment to patients with head injury, meningitis and those undergoing brain surgery. The hardest treatment to achieve is cure. Epilepsy can be best controlled and managed rather than talk about cure. Patients may have to be on the medications for the rest of their lives.

Epilepsy can be controlled by medications such as phenytoin, sodium valproate and carbamazepine to name the famous three. These drugs can reduce the frequency and severity of the seizures by keeping the nerves quiet and making it difficult for them to short circuit. There are many other drugs and newer ones which can control seizures effectively.

Are the drugs within reach and what’s the cost implication?

Many of the drugs are available in Nigeria and there are many reputable local manufacturers. The main drugs mentioned above are available and may cost up to N300 per day for effective treatment. More expensive drugs may be necessary if control is not adequate. Many really expensive drugs are not available in Nigeria.

Other ways to treat epilepsy is surgery. There are certain types of epilepsy caused by irritation of the brain due to an abnormality in the brain, head injury or a brain tumour that can be cured by surgery. Treating the cause such as removing the abnormal area or a brain tumour can then lead to cure. There are also special procedures that brain surgeons use to reduce the number of seizures a person suffers, or in fact, to stop the seizures, if the patient feels that a seizure is coming on. Surgery can be expensive. Financial cost for surgery could be as low as N100, 000 to as high as N1m or more.

What is the prevalence of epilepsy in Nigeria and where do we have the highest cases?

As with most diseases and conditions in Nigeria, we do not have any reliable statistics. Epilepsy as a disorder is prevalent and many people suffer in silence.

How should people treat someone having a seizure?

Patients having a seizure or a fit can jerk around, lose consciousness and foam from the mouth. The fit can last seconds or a few minutes as long as 5 minutes. In close to 90% of cases, the fit stops by itself and the patient recovers as if nothing happened.

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 do not 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.

If the seizure does not stop or is repeated often without the person waking up in between, please get medical help immediately. Take the person to the nearest hospital where they can be helped.

Things you must not do

People trying to help can cause untold suffering, pain, lifelong disability and death. 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 (urine, drugs and alcohol) are poured down the throat of the sufferer. This can lead to choking, aspiration, pneumonia and death.

How can we position our health system to better respond to epilepsy?


Remove ignorance and increase access to the right information and specialists. The three most important ways we can help people with epilepsy are as follows:

1: Create more awareness about epilepsy. This is vital and of real benefit by removing ignorance about the disease and making it understood by ordinary people, educated and otherwise. This is why we have created the WORLD EPILEPSY DAY to promote more enlightenment about the condition.

 

2: Make the drugs more available and cheaper to obtain by patients. The drugs can be expensive and so patients stop taking their medications leading to recurrence of their seizure. The government MUST talk to the big manufacturers to make the drugs widely available for Nigeria and also reduce the costs.

3: There are few neurologists and even fewer neurosurgeons in Nigeria and so the number of specialists available to manage the large number of patients is small. Efforts must be made to train more specialists and position them in all the six geopolitical zones for wider coverage.