Epilepsy: Unveiling a misunderstood disorder

2010-08-04
THE PUNCH Newspaper- Solaade Ayo-Aderele

Genevieve, a woman in her forties, narrates her story to our correspondent.



”When I resumed at the media house where I was posted to do my primary assignment as a 22-year old youth corps member, it was the best thing that could happen to me, what with the extra allowance the medium paid corps members posted to serve there. Indeed, it was approximately 95 per cent of the stipend the Federal Government was paying corps members then. So, life was good-at least on the surface of it.



”Being an attractive young lady, men flocked around me, each asking for a date with me. I accepted a few; and when a young bachelor among them expressed serious intention about marriage, I accepted. Not long after, he was transferred to another state; so, our relationship assumed a new shape, as we mostly communicated by letter. Phones were a rarity then. As such, my fiancé only knew what I told him about myself, though I must confess that I withheld the most vital information about my health, fearing that it could make him change his mind if he knew that I was epileptic.



”Though I had regular epileptic seizures once every month, he didn‘t get to know about it, as everybody seemed to be cautious about being accused of breaking our relationship. We married after my service year and almost immediately, I became pregnant. Six weeks into the pregnancy, I had a seizure. It was late in the night. Of course, having lived with the disorder since I was a child, I knew that the seizure was coming, but there was no how I could prevent it.



”The shame that it portends made it compulsory to guard my health condition in utmost secrecy, but it backfired. I had the seizure, but being ignorant of what was really happening, my husband could only rally neighbours to come see what was happening to his new bride.



”The neighbours, mostly adults, immediately recognised what was going on and they tried so hard to stop me from injuring myself. But then, as I came out of the seizure, I started bleeding and the doctor later confirmed that I had lost the baby. He also explained to my husband that I was suffering from epilepsy, which really angered him. He was angry especially because I kept the information from him and led him by the nose, so to say, into marriage. He simply walked out of the union and that was it.”



Now a single mother of a 10-year-old boy whom she had through a casual relationship, Genevieve said she wished she knew better than she did when she was growing up.



”But then, what do you expect from a youngster when even my parents talked about my condition in low tones, guarding the secret from neighbours and distant relations. Worse still, I didn‘t know any other person who had epilepsy all the time I was growing up; nor do I know anyone who does now. It is simply a dark world that people with the disorder and their relations prefer to further shield from the prying world.”



According to the World Health Organisation, about 50 million people worldwide have epilepsy; and nearly 90 per cent of them are found in developing regions, of which Nigeria is one. And though epilepsy responds to treatment about 70 per cent of the time, about three-fourths of affected people in developing countries do not get the treatment they need. Worse still, WHO says, people with epilepsy and their families can suffer from stigma and discrimination in many parts of the world, hence the informal oath of secrecy that surrounds it, which further prevents people living with the disorder from seeking medical help.



A psychiatrist with the Federal Medical Center, Bida, Niger State, Dr. Ladipo Adepoju, defines epilepsy as a chronic neurological disorder that affects people of all ages.



According to him, ”It is characterised by recurrent seizures-which are physical reactions to sudden, usually brief, excessive electrical discharges in a group of brain cells.”



”Different parts of the brain can be the site of such discharges. In other words, it means that seizure is the action, while epilepsy is the diagnosis or the disorder. It can be caused by several things in children-birth traumas, childhood infections of the central nervous system, congenital malformations or high fevers.



”Genetic causes are not taken away too. In older people, injuries from head trauma, cerebro-vascular disease, alcohol, stimulant drugs and side effects of some drugs could cause seizures,” Adepoju explained. The most common type-for six out of 10 people with the disorder-is called idiopathic epilepsy and has no known cause, WHO says.



Adepoju also disclosed that ”seizures can vary from the briefest lapses of attention or muscle jerks, to severe and prolonged convulsions-that is violent and involuntary contractions, or a series of contractions of the muscles. Seizures can also vary in frequency, from less than one per year to several per day.



”Characteristics of seizures vary and depend on where in the brain the disturbance first starts, and how far it spreads. Temporary symptoms can occur, such as loss of awareness or consciousness, and disturbances of movement, sensation (including vision, hearing and taste), mood or mental function. People with seizures tend to have more physical problems (such as fractures and bruising), higher rates of other diseases or psycho-social issues,” he explained.



The WHO statistics on epilepsy reveals that ”the estimated proportion of the general population with active epilepsy (that is, continuing seizures or the need for treatment) at a given time is between 4 and 10 per 1,000 people. However, some studies in developing countries suggest that the proportion is between 6 and 10 per 1,000.”



In developed countries, WHO says, annual new cases are between 40 to 70 per 100,000 people in the general population. However, in developing countries, this figure is often close to twice as high due to the higher risk of experiencing conditions that can lead to permanent brain damage.



”Close to 90 per cent of epilepsy cases worldwide are found in developing regions,” WHO says.



A neurosurgeon with the Neurology Unit, Department of Medicine, University of Ilorin Teaching Hospital, Dr. Emmanuel Sanya, said though epilepsy is the most common non-infectious chronic neurological condition encountered in general practice, it is a complex disorder that requires specialised knowledge for a correct diagnosis, classification and treatment.



”Often, epilepsy is misdiagnosed for diseases like syncope (temporary loss of consciousness and posture, described as ‘fainting‘ or ‘passing out,‘ usually related to temporary insufficient blood flow to the brain); panic attacks, hypoglycaemia (caused by a lower than normal level of blood glucose) or transient ischemic attack (often colloquially referred to as ‘mini stroke‘),” Sanya said.



”Consequently, over the past decades, it has been shown that ‘the treatment gap‘ (that is, percentage of patients in a defined population with active epilepsy not receiving anti-convulsant medication) in the developing countries varies from 60 to 98 per cent.



From our correspondent‘s interactions with a handful of people living with epilepsy, most of them were absolutely unaware that it is a medical condition that can be treated and cured.



According to Adepoju, like other diseases and disorders, ”epilepsy has a history of having been thought of as an affliction, especially when there was little knowledge about it.”



Shattering another myth about the disorder, Adepoju said, ”It is not contagious. It is a myth that it is. It can be well managed so much it doesn‘t give problems. If adequate and consistent compliance with medications can be done, and an affected person is seizure-free for about four years, then it is believed to be cured.”



The World Health Organisation says epilepsy is one of the world‘s oldest recognised conditions, but fear, misunderstanding, discrimination and social stigma have surrounded it for centuries. ”Some of the stigma continues today in many countries and can impact the quality of life for people with the disorder and their families,” WHO adds.



Apart from cultural beliefs that prevent people from accessing medical care, the number of professionals that can manage the disorder is rather dismal. Yet, it increases a person‘s risk of premature death by about two to three times, compared to the general population.



Sanya revealed that in Nigeria, like other developing countries, specialisation in Neurology is just gaining ground. Thus, the general practitioner and other health care providers manage significant number of patients with epilepsy.



Adepoju corroborated this. According to the psychiatrist, he is the only one attending to patients in Niger State, Northern Nigeria, with a population of over four million people.



Worse still, a study conducted by Sanya and Tosho Musa among a randomly selected group of health care providers in 12 of the 16 council areas of Kwara State, Nigeria, showed that 46 (67 per cent) of the respondents had been in medical practice between six and 15 years. Except for the basic knowledge, almost all (94.4 per cent) of them did not have further training on epilepsy; while only 18 (25 per cent) of the private practitioners requested for an electroencephalogram (EEG) in the initial evaluation and diagnosis of epilepsy in their practices.



With regard to the number of seizures required to make a diagnosis of epilepsy, 25 (35.2 per cent) of the respondents would diagnose epilepsy after the occurrence of a single seizure; 26 (36.6 per cent) after two seizures, while 20 (28.2 per cent) required patient to have had more than two seizures to make the diagnosis epilepsy. The WHO says that epilepsy is defined by two or more unprovoked seizures.



According to Sanya, it has been observed that medical doctors have inadequate knowledge about epilepsy, with documented lack of interest in this chronic neurological disorder. Adepoju expressed concern that in addition to the lack of professionals to take care of patients, ”there‘s so much secrecy and misunderstanding of epilepsy that much needs to be done to lift the veil and bring succour to people with the disorder.”

 

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