Epilepsy patients no longer need to fear being regarded as vessels of evil spirits. Cures are easily available, writes RANJEETHA PAKIAM.
WHEN Saiful Helmi Ismail, 31, was diagnosed with epilepsy, his parents were relieved.
Ever since his first epileptic seizure in his teens, family members and friends were convinced that he was possessed by spirits and urged his parents to refer him to a bomoh.
But Ismail Junid, 54, and his wife, Rusna Ibrahim, 54, knew that there had to be some medical explanation for their son’s condition.
With proper medication and epilepsy surgery, Saiful now leads a normal life and has a steady job.
His life now is a far cry from the days when he had to depend on his parents for everything and he had to endure the look of fear on his friends’ faces when he suffered a seizure.
Although the conditions of epilepsy patients are more widely understood and accepted by the public today, a social stigma concerning the illness still exists.
Hospital Universiti Kebangsaan Malaysia professor and senior consultant neurologist Prof Dr Raymond Azman Ali said epilepsy patients were still viewed in a negative light, especially in rural areas.
"There is still a lot of stigma and prejudice against patients as people believe they have been cursed or are possessed. If a patient is having a seizure on the roadside, nobody wants to even go near to help him.
"Even employers at work are prejudiced against epilepsy patients. Of course, they can’t have jobs which require them to work with firearms or in high places, but they can do so many other things," he said.
Dr Raymond said epilepsy patients who were on the latest drugs could perform normally as the medication had reduced side-effects but maintained efficacy.
"Previously, epilepsy patients on medication to control their seizures had to deal with a host of unwanted side-effects such as obesity, drowsiness, unsteadiness and tremors.
"One of the drugs caused women to look manly — they developed moustaches, their faces became coarser and their gums became thicker and more prominent," he said.
In the 1990s, research for neurological diseases was at its pinnacle with a lot of funding pumped into epilepsy. As a result, new and improved drugs were developed. The drugs available locally are Levetiracetan, Topiramate and Oxcarbazapine.
Topiramate is a favourite among women, claims Dr Raymond, as the patient loses between five and 10 per cent of total body weight after taking it.
Patients who have suffered from uncontrolled seizures for more than two years and have not responded to at least two appropriate anti-epileptic drugs have the option of undergoing epilepsy surgery.
In Malaysia, HUKM is where the majority of patients are referred to for epilepsy surgery, which entails removing the part of the brain where the epilepsy focus is.
The first person was operated on in 1996 and since then, HUKM has handled about 70 surgeries.
According to Dr Raymond, 80 per cent of the patients who underwent epilepsy surgery reported they were "cured of epilepsy".
"Only one suffered from a minor stroke, but so far, no one has died from the surgery.
"When they ask if there is a chance of dying, we say yes, but the mortality rate is less than one per cent in the world, while the morbidity rate is two to three per cent — patients may suffer from loss of a quarter of their visual fields in each eye.
"Memory in most patients is improved after surgery."
However, Dr Raymond said the criteria for undergoing epilepsy surgery are stringent in Malaysia.
"The pre-surgical tests will take months as we want to make sure the surgery is safe and effective.
"We assess the patients to establish the type of epileptic syndrome they are suffering from and to ensure they are compliant, meaning they take their medications regularly."
Patients have to undergo physical evaluations, IQ (intelligence quotient) tests, brain scans and EEGs (Electroencephalography).
Dr Raymond said patients with an IQ of lower than 70 are not operated on as experience showed that those with low IQs do not fare well after surgery.
Those with severe psychiatric illness were also not considered for surgery as doctors have found that while the seizures ceased, the psychosis often worsened after surgery, he said.
If patients have passed all the evaluations, they will finally be asked to list down their goals in life after surgery.
"Those who really want their lives to be seizure-free will list such things as a desire to get married, to be able to drive and to have a job.
"Usually, we operate on those with specific goals in life," said Dr Raymond.
Saiful glad to be leading normal lifeSAIFUL Helmi Ismail almost lost his life because of an epileptic seizure.
While returning home from work in the LRT one day, Saiful began having fits. He was shaking and foaming at the mouth.
At the next station, he was herded out by the disembarking crowds. Still unaware of his surroundings, Saiful fell down just outside the sliding doors of the LRT.
As the train moved, Saiful was hit, but was lucky as only his right leg was in harm’s way.
He broke a shin bone, but Saiful never felt it at the time. He was still suffering from the after-effects of the epileptic seizure and it was only when he regained consciousness at the hospital with his leg in a cast did he realise what had happened.
The accident occurred in 1996. Saiful, now 31, said he began having epileptic seizures after he sustained a head injury during a friendly football match.
"I fainted after receiving a strong kick to my head. But it was only after two years that I began to feel the effects of the kick.
"I began having seizures. My body would start to feel cold and I used to experience a feeling of weightlessness. Then my body would go stiff and if I was holding a pen or pencil or anything else in my hand, I would grip it so hard, it would break.
"I would also start shaking and foaming at the mouth."
Saiful suffered for years, his seizures occurring at least three or four times a week, each seizure lasting for about six minutes.
He used to receive medication for the seizures and went for monthly check-ups at the hospital but was told that nothing else could be done to help him.
The turning point in his life came when he was referred to Hospital Kuala Lumpur. The specialist there told him there was hope for him to lead a normal life though epilepsy surgery.
After various tests, Saiful underwent his first operation in February, 1998 in Hospital Universiti Kebangsaan Malaysia, the centre for epilepsy surgery.
Due to severe bleeding, the operation was discontinued after only part of the lesion was removed.
His seizures were reduced after that to only twice a week but the doctors recommended another operation as they said he had a 75 to 80 per cent success rate.
Seven months later, Saiful’s second operation went off without a hitch and he has not had a single seizure since.
It has been eight years since the epilepsy surgery and Saiful now leads a normal life. He secured a job as a finance executive in a bank and has been happily married for a year now.
Patients find emotional support to be crucial
MEDICATION alone is not enough to ensure a better quality of life among epilepsy patients.
As with all other debilitating diseases, epilepsy patients cope much better when provided with strong emotional support.
A study conducted in 2004 by a team of researchers from Universiti Malaysia Sabah showed a positive correlation between the overall quality of life of the patient and emotional support.
The study, which sampled 113 patients from 10 hospitals in Sabah, centred on the relationship between the quality of life of epilepsy patients and the types of coping mechanisms used by them to deal with the illness.
Pharmacist Dr Lua Pei Lin, who led the team, said people with epilepsy suffered from psycho-social difficulties, such as forging inter-personal relationships, gaining employment, and facing discriminations.
"Because of these psycho-social disorders, their quality of life is reduced, which means the way they lead their life is affected in a negative way.
"Epilepsy patients don’t feel comfortable in a group of people they’ve just met. They are hesitant when it comes to travelling long distances or even to just go shopping because they are afraid they might have seizures," she said.
Lua, who now lectures at Universiti Teknologi Mara, said patients coped with the disease most frequently through religion, with over 60 per cent saying that religion contributed to their well-being.
She said patients also looked for instrumental support by asking others for advice with regards to treatment and medication. Emotional support from family members and friends who understood the difficulties in dealing with the disease was crucial in coping.
"Patients also turn to ’active coping’, which means they try to do something positive about their illness.
"For example, some patients read up more about epilepsy while others try to find the best medication," she said.
The study showed that less frequent ways of coping with epilepsy were through alcohol or drug abuse, behavioural disengagement (being in denial about having epilepsy) and self-blame.
The study also showed that marital and employment status influenced the quality of life.
The study showed that 60 per cent of the patients were married while 48 per cent were jobless.
Those who were married claimed to have a better quality of life, but it was the opposite for those who had jobs, who fared worse than the unemployed patients.
This was unexpected, as she said global studies had found epilepsy patients to be happier when employed.
But there is an explanation for this.
Lua said it was possible that patients who had jobs were constantly worried that their colleagues would find out about their illness and feared being discriminated against.
This, she said, rang true in a few Asian countries where epilepsy was still viewed in a negative light.
"A social stigma still exists when it comes to epilepsy. People are fearful when they see patient suffering from seizures.
"People have a misconceptions about epilepsy, wrongly equating the disease to psychosis. They think an epileptic seizure is a form of a psychotic episode."
Educating the public on the disease would put a stop to discrimination against epilepsy patients, and Lua said she hoped the study would serve that purpose.
The study concluded that future epilepsy care management should include health-related quality of life assessment as well as advice on useful strategies to deal with the illness.
Frequently asked questionsQ: What is epilepsy?
A: Epilepsy is a neurological condition that affects the nervous system. Epilepsy is also known as a seizure disorder. It is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition like alcohol withdrawal or extremely low blood sugar level.
The seizures in epilepsy may be related to a brain injury or a family tendency, but most of the time the cause is unknown. "Epilepsy" does not indicate anything about the cause of the person’s seizures, what type they are, or how severe they are.
Q: Who gets it?
A: Epilepsy can develop in any person at any age. About 0.5 per cent to two per cent of people will develop epilepsy during their lifetime. People with certain conditions may be at greater risk. More men than women have epilepsy.
Q: How does it begin?
A: The reasons why epilepsy begins are different for people of different ages. But what’s true for every age is that the cause is unknown for about half of everyone with epilepsy. Children may be born with a defect in the structure of their brain, or they may suffer a head injury or infection that causes their epilepsy. Severe head injury is the most common known cause among young adults.
In middle age, strokes, tumours, and injuries are more frequent. In people over 65, stroke is the most common known cause, followed by degenerative conditions such as Alzheimer’s disease.
Q: What are some of the symptoms of an epilepsy seizure?
A: In movies, epilepsy patients are almost always depicted as having major seizures with eyes rolling backward, foaming at the mouth and sometimes ending in unconsciousness. However, an epileptic seizure can also be as mild as slight twitches. The severity of a seizure is very individualised.
The most commonly seen in movies is the grand mal seizure, now known as ‘tonic-clonic’ seizures. Grand mal seizures cause a lot of problems to the patient as they collapse, their eyes roll up, they bite their tongue, urinate, they jerk for hours and then they sleep.
Simple-partial seizures mean they don’t lose consciousness with some patients displaying minor twitches. There is usually no need for medication in these cases.
Temporal lobe seizures are the most common for operations. Patients who experience this type of seizure usually start with a blank stare followed by a chewing movement and lip smacking.
The commonest type of seizure in children is the absence seizures which is defined by blank stares. When this happens in the classroom, teachers think the student is daydreaming.
Sources: www.epilepsy.com and neurologist Prof Dr Raymond Azman Ali.Source :
NST[tags :
seic epilepsy seizures children pediatric neurology]
