Stigma affects access to epilepsy treatment

By Vivian Agaba

A seizure attack happens suddenly, lasts a short time and stops on its own. Therefore, a patient cannot do anything to stop it from occurring.

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Whenever Paula Oyela got seizures during lectures or at her hostel and collapsed, other students would run away, leaving her helpless.

During such an episode, she would drool saliva and her head and arms would jerk continuously.

She says her peers explained to her that they could not help her when she was having an epileptic attack because they feared that if they came into contact with her saliva, then they would also contract epilepsy.

On the other hand, some believed that breathing in the same air as such a person after puffing, would make them get the condition. Oyela suffered a lot of discrimination over a condition she had no control over. She was born with epilepsy.

What is Epilepsy?
Dr Richard Idro, a consultant paediatrician and paediatric neurologist at Mulago Hospital, defines epilepsy as a neurological disorder of the brain in which an affected person has a tendency to get unprovoked recurrent seizures or fits.

Seizures are brief episodes of involuntary movement that may involve one part of the brain (partial seizure) or all areas of the brain (generalized seizure).

"Seizure episodes are a result of excessive electrical discharges in a group of brain cells. The discharges may remain confined in that part of the brain that is affected by the seizure and will manifest as jerking movements, or abnormal sensations in the body, where by a person feels like things are moving into his/her body in the part controlled by the affected area of the brain," he explained.

If the seizure attack involves the entire brain, it may manifest as convulsions that shake the whole body and with loss of consciousness. 

 A seizure attack happens suddenly, lasts a short time and stops on its own. Therefore, a patient cannot do anything to stop it from occurring.

The frequency of seizures varies, for some individuals, it may happen more than five times a day, while in others; it may happen once a month or year.

Idro notes that a one-off seizure episode does not signify that one has epilepsy. He adds that up to 10% of people worldwide have one seizure during their lifetime. Anyone can develop epilepsy at any time, any age and though some people are born with epilepsy, others get it later in life.

Dr Martin Kaddumukasa, a neurophysician at Mulago Hospital, reveals that there are several causes of epilepsy. In Uganda, among children, the condition is largely due to infections during pregnancy, delivery and after child birth. These account for 5% of the cases of epilepsy in Uganda. 

He adds that 95% of cases of epilepsy among children have no identifiable cause.

Epilepsy among children can be due to brain damage from prenatal injuries such as damage to the embryo or foetus before birth, low levels of oxygen reaching the child's brain, injury to brain cells from toxins, bleeding in the brain and low birth weight.

"Good prenatal care including proper nutrition for the mother, detection of high risk pregnancies and managing of high blood pressure and infectious diseases during pregnancy can prevent brain damage in the developing baby that may lead to epilepsy," says Dr Kaddumukasa.

Pregnant women must also avoid consuming alcohol, smoking and self-medication as these habits are known to increase the risk of exposing an unborn baby to infections that can cause epilepsy.

Other causes of epilepsy in other age groups include; stroke, or brain tumours, head trauma and fracturing of the skull sustained in road traffic accidents, cerebral malaria and meningitis.

Undercooked pork
Dr Abdu Kisekka, a neurophysician at Mulago hospital, says eating undercooked pork is another new worrying cause of epilepsy that is on the rise worldwide. He explains that brains are infected by the tapeworm known as Taenia Solium (taeniasis) acquired by humans through the ingestion of tapeworm larval cysts in undercooked pork or beef.

He suggests that pork must be well-cooked to kill all the eggs and avoid catching trichinosis, a food-borne infection that is typically acquired by eating under cooked pork.

According to Centers for Disease Control and Prevention, eating raw or undercooked pork infected with the parasitic worms, Trichinella spiralis can lead to trichinosis.

When cooking pork, it essential that the meat is handled and stored properly to ensure safety, a clean working environment is essential in the prevention of contamination when working with pork.

It is advisable that one washes one's hands thoroughly well before and after handling raw pork. The work area, cutting boards and utensils must be thoroughly cleaned with hot soapy water after being exposed to raw pork and should not be used for other foods until properly cleaned. This will prevent cross contamination of bacteria from the pork to other foods.

Types of epilepsy
Dr. Abdu Kisekka, a neurophysician at Mulago hospital, says there are different types of epilepsy categorized according to the cause.

The symptomatic or secondary type of epilepsy is caused by trauma, brain infections during childhood, stroke or tumours.

The cryptogenic type of epilepsy is epilepsy with no obvious cause, and several researches are being done to find out what causes this type of epilepsy.

Dr. Abdu Kisekka says idiopathic type of epilepsy is the most common type of epilepsy which affects six out of ten people with the disorder worldwide, no there is no apparent cause.

Symptoms of a seizure
Dr.Kaddumukasa notes that symptoms of a seizure include jerking and drooling of saliva, severe headaches, unusual heart pounding, abnormal sensation in a way that a patient feels like caterpillars are moving all over their bodies.

Other symptoms are loss of consciousness followed by confusion, falling, clenching of the teeth, biting the tongue, having sudden, rapid eye movements and having uncontrolled muscle spasms.

Dr. Kisekka mentions that sometimes, seizures are triggered by missing medication, heavy alcohol use, cocaine or drug use, stress, sleep deprivation, and flickering lights.

 "To avoid seizures, an epileptic patient ought to religiously taking medicine and stay away from things that may trigger an attack, such as staying away from alcohol or drug abuse as well as staying calm all the time. Stress, anger and depression can trigger a seizure" Dr. Kisekka advises.

Relatedly, Dr. Rita Atugonza, a paediatrician at Baylor College of Medicine Children's Foundation Uganda reveals that people with seizures are prone to having more physical injuries like bruising and fractures, burns, and accidents as well as high rates of psychological conditions including anxiety and depression.

In addition, the risk of premature death in people with epilepsy is up to three times higher than the general population, with the highest rates found in low- and middle-income countries and rural versus urban areas.

This is because such people are highly stigmatized and accessibility to medical care becomes a challenge, yet most of these causes are potentially preventable if such patients have proper care.

The situation in Uganda
Experts at Mulago hospital are working out researches to estimate how many Ugandans are suffering from epilepsy.

But according to a study done at the same facility in 2010 and published in the Neurology journal revealed that young people aged between 20 and 29 years, adults aged between 45-50 years were more affected with the disorder than other age groups.

The study also revealed males were more affected by epilepsy than females, and this was attributed to exposure to recreational drugs, high levels of alcohol intake, high levels of stress related to work, academics, and traffic accidents among others.

Dr. Idro says epilepsy is quite common in Uganda, out of the 44 million people, about 400,000 Ugandans have the disorder, that is 1/100 Ugandans has the disorder.

He adds that some surveys were done in regions like Northern and Rwenzori's, and here, the prevalence is quite higher at 2%.

"In districts like Kitgum, Pader, and in the Rwenzori regions, the prevalence of epilepsy is higher. This is because in these areas, maternal birth services are still poor, parasitic infections are also common, making the risk much higher for birth injuries and infections," he says

He says there is need to increase and improve maternal and child health services in these regions to reduce the risk associated with child birth that may expose children to epilepsy.

According to WHO, approximately 50 million people currently live with epilepsy worldwide, globally, it is estimated that 2.4 million people are diagnosed with epilepsy each year.

In high-income countries, annual new cases are between 30 and 50 per 100 000 people in the general population while in low- and middle-income countries, this figure can be up to two times higher.   

According to the Epilepsy in the WHO African Region, the Global campaign against epilepsy, bridging the gap on the African continent suggests that epilepsy affects 10,000,000 people directly, and these are people of all ages most especially within childhood, adolescence and aging population. Close to 80% of people with epilepsy live in low- and middle-income countries.

Dr.  Richard Idro, Consultant Paediatrician and paediatric neurologist, Mulago hospital says epilepsy is a treatable disorder, and with adherence to medication, epileptic people can live normal and productive lives.

He explains that a number of drugs are taken to control epilepsy. Upto 70% of patients receiving appropriate anti-epileptic drugs and taking them as prescribed by health workers will get cured; the 20% can only have the number of convulsions reduced with the help of the medication, while the 10% may not recover at all because they have severe forms of epilepsy.

"The 70% who get cured are those that take their medicines as prescribed. We keep monitoring them as they undergo treatment, if after six months of treatment, there are no seizures, and we slowly take the patient off of the medicine. If a patient has not had any single seizure attack after two years of treatment, this person is declared cured," Dr. Idro points out

He notices that anti-epileptic drugs are available in most health centre III, IVs and all general hospitals in the country, though sometimes there are shortages. But despite the availability of the drugs, 60-80% of patients do not take these drugs, the convulsions remain uncontrolled and patients suffer repeated seizures.

Outside the medical care and treatment, a patient or relatives may be faced with challenges of discrimination from community; Dr. Idro says one should be able to talk to social workers who work with health facilities for social support.

Dr. Kaddumukasa explains that medication plays a crucial role in treating and managing the condition, but warns that patients, who live in denial, do not want to accept they are sick and seek for medical assistance, may live uncomfortable lives of constant attacks.

He also advises caretakers or relatives of patients with epilepsy to be supportive, as this will encourage the patients to come out and seek for help other than living in denial.

Brain surgery
Dr. Kaddumukasa says some patients may undergo brain surgery which involves operating on that part of the brain that is causing the seizures.

He explains that surgery is provided as an option for patients, who have failed on medication, for instance, those with severe and prolonged seizures that last longer than three minutes, are persistent, continuous, these seizures require immediate interventions to prevent permanent damage.

After 2 to 5 years of successful treatment and being seizure-free, drugs can be withdrawn in about 70% of children and 60% of adults without subsequent relapse.

The experts say one is supposed to remain on the anti-epileptic drugs prescribed by the health worker, otherwise mixing with other drugs may interfere with each other, making them less effective.   

The experts also say that some anti- epileptic drugs have side effects, can lead to inflammation of the liver, heart and nerves, assessing the patient first before putting them on any medication is key.

How epilepsy affects the patient and family members.
Epilepsy comes with emotional, psychological and social-economic effects not only to the patient but family members.

People living with epilepsy can be targets of prejudice, the stigma of the disorder can discourage people from seeking treatment for symptoms, so as to avoid becoming identified with the disorder.

In many African cultures, epilepsy is associated with ancestral and traditional rituals, evil spirits or witchcraft, and many times, the patients are abandoned by their relatives.

In Uganda alone, 90% Ugandans believe epilepsy is as a result of evil spirit, and when a person develops the condition, he or she is rushed to witch doctors or traditional herbalists, it is when the patient fails to improve that the relatives decide to seek for medical care.

Other myths associated with epilepsy include; one can swallow their tongue during a seizure, something like a stick, fork or spoon should be forced into the mouth of someone having a seizure so that they do not bite themselves.

Experts say this is absolutely wrong; as such objects may harm someone's teeth, puncture the gums or even break someone's jaw.

Dr. Noeline Nakasujja, an associate professor of Psychiatry, Makerere University College of Health Sciences says a patient should be made to lie down in a recovery position with a hand tacked under their head, adding that making them to sleep on their back may make the person choke on the saliva in the mouth.

Some people believe epilepsy is contagious, that a person with a seizure should be restrained; only children get epilepsy, people with epilepsy are disabled and cannot work, people with epilepsy should not be in jobs of responsibility and stress, and that people with the condition are physically limited in what they can do.

But the experts say the condition can happen in any one at any age, though among children it may be related to infections during pregnancy, among the adults, it will occur after occurrence of other health challenges such as stroke or accidents.

The experts also point out that people with the condition have the same range of abilities and intelligence just like everyone else, and can live successful and productive lives, save for those with severe epilepsy.

Dr Rita Atugonza, a paediatrician at Baylor College of Medicine Children's Foundation Uganda points out that stigma is the major challenge patients with epilepsy or their families face because no one wants to associate with them.

She says children with epilepsy are hidden for fear of the family being ostracised, and the situation is made worse by myths that epilepsy is contagious.

"Epilepsy is not contagious, people with epilepsy need to be loved and cared for to be able to accept what they are going through and seeking for treatment. Children with epilepsy can also go to school, perform well and live better and productive lives as long as they get proper treatment. Do not hide them at home," she advises.

"Whether an epileptic person is a child or mature person, they all need proper treatment to avoid possibilities of permanent damage. Do not take them to witch doctors because the disease is not caused by evil spirit, take them for proper medical care and stand chances high chances of recovery once one is treated early," she adds

However, repeated seizures can lead to psychiatric complications like mental retardation, major depression, memory loss, post-traumatic stress disorder, all these can lead to brain damage.

Many epileptic patients also have other problems including disability, challenges in behaviour, for instance, epileptic people live in fear of an attack and this may expose them to stress, frustration and anxiety.

Dr. Idro explains that children and adolescents with epilepsy and adults who had childhood-onset of epilepsy may have increased incidence of learning difficulties due to brain damage involved especially if the child did not receive proper treatment, and this leads to poor educational attainment, higher rates of social isolation and have low chances of being employed especially those with recurrent and severe epilepsy.

In 2012, epilepsy was responsible for approximately 20.6 million disability-adjusted life years (DALYs) lost worldwide and has significant economic implications in terms of health-¬care needs, premature death and lost work productivity.

All experts agree that to end discrimination against people with epilepsy, there is need to bring the condition out of the closet, expose it, educate the public about the condition, treatment and prevention and help initiate universal access to treatment programs and support those on such treatment programs towards cure.

Social support
In Uganda, Epilepsy Support Association (ESAU) is the only registered national organisation that brings together persons with epilepsy with the main aim of fighting for their rights.

Located Gombe B village off Kayunga-Kinoni-Wakiso road, Wakiso town-council, the indigenous NGO also brings together people with epilepsy, their families and other people to work towards eliminating the social stigma attached to the condition and create an environment in which epilepsy is better understood.

The organisation which has been in existence since 1997 is involved in advocacy and capacity building of the people with disabilities with emphasis on people with epilepsy.

It mobilizes people with the condition to form support groups through which they can meet and share experiences, offer each other mutual support and lobby for better services at both sub county and district levels.