NAIROBI: The first time 22-year-old Geoffrey Hinga experienced a seizure he was a class eight candidate. “I was 12 years then,” he says.
That first episode opened a flood gate of seizures and on a bad day he endured three powerful vortexes that robbed him of consciousness and a normal life.
“Each of the tremors would be preceded by a moment of calm and I would stop perceiving anything around me. I don’t know exactly what follows next but when I come to, I see people hurdling around me and I know I have just gone through another one,” he says.
Geoffrey was too young to understand what exactly was happening to him. But not too young not to notice that his friends were isolating him with each passing day.
“I could tell that the other boys kept their distance from me. Many feared that I was cursed and I would infect them if they came close,” he says.
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Judging from the way he fidgets as he relives the incidents, Geoffrey’s recollection still haunts him to this day, although he says he has gotten over it.
Progressing through secondary school proved to be even more challenging. An adolescent like him could have done well by a few social interactions with peers. He would, however, recoil away from such interaction. Time alone at the library or in the laboratory was all he preferred, away from the curious gazes.
Because of the convulsions, Geoffrey was deemed ‘weird’ by many of his classmates. He knew so because simple interactions such as borrowing a pen from a colleague proved difficult and awkward.
“When I was not having seizures I was fine, I felt okay. That is why I could not understand why my peers shunned me,” he says.
It is easy though to understand why his peers appeared distant. Prof Halimu Shauri, a sociologist at Pwani University, says adolescents experience a lot of peer pressure and are therefore exposed to “agents of socialisation through comparison.”
In reality, Geoffrey was just as aloof as his peers about ‘the curse’ that ailed him. And while he is yet to know what caused the seizures to begin, his problem, as he would learn later, had nothing to do with the supernatural.
“Epilepsy is a medical condition that is brought about by injuries to the brain,” says Dr Osman Miyanji, a paediatrics neurologist at Aga Khan University Hospital.
He continues: “Injuries could happen at any given time in one’s lifetime; at birth or during growth in one’s life, or through physical trauma or disease.”
The wound caused to the brain causes a scar as it attempts to heal and it is, the doctor says, that marks epilepsy existence in a patient.
As Dr Miyanji says, it does not matter at what point one experiences an injury. One could live a perfectly seizure-free life for years only for something as mundane as an accident to cause them to be epileptic.
This is exactly what happened to Bernard Mbunya, a Mathare slum resident and a post-election violence survivor.
“In early 2008 I remember being mobbed by people I did not know. Then a sharp blade landed on my head and I blacked out. I woke up days later at Kenyatta National Hospital,” he says.
Bernard began experiencing seizures in 2009. Right away he knew it was the injury he received during the post election violence mayhem because in his nearly 40 years of life he had never been epileptic.
“I have to take two different types of medication everyday to minimise the number of seizures. Initially they were many but with medication, these episodes have greatly been reduced,” says the father of four.
The epilepsy diagnosis was like salt onto an injury after he lost his printing press job due to a year-long hospital stay that kept him away from work.
Just like any epilepsy patient, Bernard, found himself at the end of blank stares laden with question marks. The stigma, he says, is not quite obvious but palpable in people’s mannerisms and behaviour.
According to a 2014 survey conducted by Dr Miyanji, epilepsy is the most common chronic neurological disorder in Kenya with approximately 800,000 sufferers. Yet, information and data as to what epilepsy means in Kenya is scarce and almost unavailable.
The last time a survey was conducted to determine epilepsy prevalence in Kenya was in 1991, 24 years ago. At the time, Feksi and Kaamugisha found that 18.2 in every 1,000 Kenyans were epileptic.
According to Kenya Medical Research Institute, about 80 per cent of epilepsy cases worldwide are from developing countries like Kenya. This trend has been attributed to high illiteracy and poverty among other factors.
Even after creation of National Epilepsy Coordination Committee (NECC), to spearhead work against the disease in Kenya, sufferers such as Geoffrey and Bernard still do not find it easy navigating through our social fabric into acceptance.
The NECC says this disease remains one of the most widely misunderstood conditions, with many Kenyans still stuck on myths and misconceptions equating epilepsy to witchcraft, sacred maladies, or family curses.
Ironically, such views, the committee observes, often prevent people with epilepsy from seeking proper medical treatment. Even their families are adamant against seeking help for fear of stigma and being ostracised.
But every family would find it difficult to abandon their kin. Emily Kiplimo, a sister to George Kipruto, a deceased epilepsy victim, fondly recalls how her brother’s health was improving when death struck one night.
Emily says: “He was under medication which had greatly minimised the number of seizures. He could go for months without an attack. That is why that he went to sleep and did not wake up was as shocking to us as it was painful.”
Like Hinga, Kipruto suffered his first seizure in class eight. Emily admits that her brother was withdrawn from the public and only socialised with a few close friends.
At the time of his death Kipruto was 23 and an environment studies student at Kenyatta University.
“I think epilepsy is among the ignored conditions in our society. Doctors have failed for not educating families that have an epileptic patient on how to care for them,” she says.
It is not always that epilepsy is fatal. Dr Miyanji, however, says severe and prolonged seizures can cause death. In most cases though, patients will die from harm caused by objects in the environment which inflict deadly injuries such as drowning or being hurt by machines when a seizure takes over one’s body.
According to Dr Lincoln Khasakhala, a consultant clinical psychologist with Amref Kenya, proper care for epileptic patients would be warranted because the illness predisposes them to mental conditions.
“Patients with epilepsy are stigmatised. This predisposes them to mental conditions with the commonest being depression because of severe negative emotions. This depression can then progress into bipolar disorder,” he says.
At the same time, it would help to protect individuals against performing work that is not proper for a person with epilepsy. Something that Rhoda Atieno, 30, a patient, found out the hard way after she experienced an attack as she prepared tea for her family at home.
“I blacked out. When I woke up I was being taken to hospital with the whole of my back as well as my left side burnt. I did not know that there are activities and work I cannot do,” she says.
According to the World Health Organisation, the prevalence of epilepsy at any given moment is 8.2 in every 1,000 people worldwide. Further, 70 per cent of cases are diagnosed in patients within the first 20 years of life.
Dr Miyanji, however, notes that the condition can occur at any time in one’s life.