Bitter tales of epileptic patients

As the world marked Epilepsy Day last Monday, persons living with the condition told tales of how they had lost opportunities, suffered physical and mental injuries and been isolated and discriminated against.

As if that is not enough, they dreaded getting seizures while in a matatu. Would they be safe and get help from the strangers? What if it happens while driving, would they survive the accident? What if their employer is not understanding and dismissed them from work?

These are some of the questions the epileptic patients have to contend with every day of their lives.

Most of them say their morning prayer is to not get an attack while in a place where they will be at a risk.

Ruth, a graduate, has to survive on manual jobs since no one can hire her due to her condition.

She used to work as a marketer in a company that deals with the activation of new products to the market.

One day, while at the field where they were advertising a new drink, she got a seizure and went flat for almost 30 minutes.

Her colleagues did not know how to assist her immediately and instead rushed her to the hospital.

“By the time they got me to the hospital, my tongue was almost cut off. I could not speak for months and had to use signs. As a result, I lost my job and no one could take me in whenever I mentioned the condition,” she said.

After going to several interviews and ending up being disappointed, Ruth resorted to doing any job just to make sure she pays her bills.

Ruth wishes she could be employed despite her condition and keeps hoping that day comes soon.

“My greatest fear is getting a seizure while with strangers. Will I be safe or they will turn against me and take advantage of my situation? I have so many fears but I have to co-exist with them because there is no alternative,” she said.

WITCHCRAFT OR POSSESSED?

Maxwell Nzai, 26, has to contend with getting an attack while working as a deejay at a club in Malindi.

In 2009, while in class eight, Nzai passed out while sleeping and many thought he had died as he had lost consciousness for some minutes.

Being a candidate, many thought Nzai had been bewitched by his envious neighbours or relatives who did not want him to succeed in the oncoming exams.

Several tests at a hospital in Mombasa turned out negative, and it was concluded that he was possessed.

“I was prayed but I still got seizures,” he said. That is when his family resorted to going the traditional way.

He was taken to a traditionalist to exorcise the evil spirits, commonly known as 'kuzinduliwa mapepo', but things remained the same.

Nzai was able to pass his exams and was admitted to a boarding high school.

The first time he got an attack, he woke up to find his schoolmates mourning and was sent home, where he was taken to a hospital in Malindi.

A doctor at the hospital recommended he sees a brain specialist, who later diagnosed him with epilepsy.

He was placed under medication but the epileptologist had to change his medication as the initial one was not responding well.

Nzai said even though the doctors were able to pinpoint the disease, they were not able to identify the reason behind his sudden contracting of it, having lived for years without even signs of it.

However, he suspected the stress he was undergoing as the final exams were approaching.

Years later, Nzai solely depends on the prescribed drugs, and whenever he misses a dose, he gets a seizure.

“My greatest fear is to get an attack while driving or while at work. I work as a DJ. What will happen when I just get an attack while entertaining the revellers?” he said.

Aside from wishing to wake up one day and be declared epilepsy-free, Nzai longs for the day when medication for the condition will be affordable.

He spends at least Sh4,500 every month on medicine, and the cost can be more, depending on whether he will be required to take supplements.

BURDEN ON FAMILIES

In some cases, families of patients suffer more than the patients.

Fred Beuchi, an epilepsy champion, said families who have children suffering from the condition bear more brunt than the patients.

Beuchi said the family suffers emotionally, physically and economically. He is the elder brother of Mercy, 13, who has suffered from epilepsy since the age of two.

He said the condition started in 2010 but it got worse in 2012.

Beuchi said his sister would have seizures every 20 minutes and this took a toll of the family.

“We used to leave our sister with our mother and every time we went home, we found her with fresh wounds. At one time, my mother, who was slowly sinking into depression, said maybe we were thinking she was not doing her job well,” Beuchi said.

He was forced to quit his job in Mombasa to assist his mother in taking care of his younger sister, meaning less income for the family.

But less income was nothing compared to being isolated by the people who should encourage you financially or prayer-wise.

The extended family said Beuchi's family had sacrificed their sister to devil worshipping in exchange for wealth.

They set conditions for the family to “confess" what they had done in order to get assistance from them.

Their efforts to turn to the church were futile as the church also turned their backs on them.

“My father and I were at the helm of church leadership, but we were removed. This totally derailed us as these were people who we expected to support and pray with us,” he said.

In 2013, while watching a TV, he saw an advert of an organisation dealing with epilepsy. It said it would be holding an event bringing together patients and connecting them with specialists.

Beuchi travelled to Nairobi where he was connected to an epileptologist. Two weeks later, his sister was diagnosed and placed under medication, and her seizures significantly reduced.

As a result of regular seizures, Mercy suffered stunted development as her coordination was affected. She could not talk well or do some of the things children her age did.

Three years down the line, seizures are a thing of the past and she has gone back to school.

But as the family rejoices the progress, Beuchi said emotional or mood changes trigger the condition, though she now knows how to handle them.

“Menstrual periods always trigger the condition and, therefore, she is always keen a week before or after receiving her menstrual periods,” Beuchi said.

Epileptologist Eddy Chengo of FPE Epilepsy and Neurology Centre said most of the patients suffer in silence for fear of stigmatisation.

Chengo, whose clinic is situated in Malindi, Kilifi county, said epilepsy is mostly linked to witchcraft and devil-worshipping.

He said most families who have loved ones suffering from the condition are isolated from the community, thereby ending up suffering more than the patients.

The specialist said epilepsy can be caused by hormonal or metabolic imbalances, brain injuries, diseases such as meningitis or cerebral malaria that linger, thus affecting the brain or prolonged convulsion in children.

Chengo said in areas where access to maternal care is a problem, then pre-natal injuries sustained during birth may be the major reason.

“In Kilifi county, most cases are as a result of delays during birth. A child delays on the birth canal and its head is squeezed, therefore causing damages to the yet-to-fully mature brain,” he said.

The doctor said the disease can also be passed down from generation to generation if not contained and treated early.

Also, lack of deworming can result in epilepsy, according to Dr Chengo.

CAN EPILEPSY BE CURED?

Chengo said epilepsy has two ways of curing it, depending on the type or how long a patient has had the condition.

He said a patient can be put under medication if the condition is mild, but he will be under observation for 10 years before he is declared epilepsy-free.

The observation will be looking at whether the patient is getting seizures and how frequently.

“A patient can also undergo a nerve system stimulation or can opt for surgery as an alternative treatment. It all depends on whether it is the convulsion or non-convulsion type of epilepsy,” Chengo said.

But as the doctor helps hundreds of patients at his Kilifi-based clinic, he called on the government to subsidise the cost of drugs used in treating the condition.

He said the drugs should be affordable to everyone suffering from the condition.

At the moment, a patient can use between Sh500 and Sh30,000 monthly.

To some of the patients, this is not affordable. They need the cost of the drugs to be lowered further.

Chengo further said the society needs to be educated on epilepsy and how to assist a patient whenever she gets a seizure so as to minimise harm and injuries to the patient.

He said the society should be informed of treatment options and the need to come out and seek help from the hospital.

Edited by T Jalio