By Wandera Ojanji
“I used to take it as a bad joke and always dismissed it, when fellow students would tell me that I scream at night,” remembers Mrs Penninah Omoka, a mother of five children. “I never had nightmares, so how could I be screaming at night?” she wondered.
That was in 2004, when she was a Form III student at Bukhuyi Secondary School, in Mutungu, Kakamega County, western Kenya. Life was good, fun, and worth living. But one day, something strange happened to her while in class.
“I was feeling unusually unwell. I felt very weak. I had body aches. I had nausea. I was confused and could not concentrate in class. I had episodes of staring blank, twitching of arms and legs. I was anxious and fearful and could not understand why. But that is all I remember. When I regained consciousness, I was at St Allan Medical Clinic, at Bukhuyi Shopping Centre,” she said.
However, without proper diagnosis, the clinical officer at the private clinic simply felt it was another case of malaria, prescribed antimalarials and painkillers and let her return to school.
But for Dr Eddie Chengo, an Epileptologist with Foundation for People with Epilepsy, Penninah had just exhibited classical symptoms of epilepsy leading to a seizure.
This was the first epileptic seizure during the day for Penninah, now an Early Childhood Development Teacher at Emakale Primary School in Mutungu. As it turned out she used to get seizures when deep asleep, that caused her to scream. But it never crossed her mind that she could be epileptic.
The seizures increased in intensity and severity, at one time severely biting her tongue. Concerned, the school administration called in her parents, who suspected it could be epilepsy, considering that her elder brother, uncle and four cousins were epileptic.
The mother took her to St Marys Mission Hospital, Mumias where it was confirmed that Penninah was indeed, epileptic.
“I was in shock. I did not believe it and found myself in deep self-denial. How could I be epileptic? How would I relate with my friends and relatives with epilepsy? How would they take me? I felt ashamed, embarrassed, disgraced, and humiliated. I could not accept it. I threw all the medication I had been given at St Marys into the toilet. I could not let anyone else know that I was epileptic,” states Penninah.
“With increased frequency and severity of the seizures, my fellow students and the school community in general became aware of my epileptic status. My interaction with friends and fellow students deteriorated. The stigma, the abuse, and the discrimination deeply hurt me. I could not stand it anymore. In 2005, I dropped out of school.”
Out of school, young and beautiful, it was not long before she got a suitor. But due to the stigma, abuse, and the discrimination she had suffered, she did not disclose her condition to her husband, Caleb Mulaa.
It was a heavily guarded secret, but one that was bound to explode any time. And it did not take long before the seizures struck. “My husband was terrified. Not knowing where to start, he rushed to my parents for guidance,” she remembers.
After getting the story from my mother, Mulaa calmly but affirmatively beckoned her to go to hospital. Fearing that St Marys might be aware that she discarded her medication, Penninah requested her husband to take her to a faraway hospital.
“I was still so ashamed, in denial and strongly convinced that epilepsy was witchcraft and could therefore only be treated through witchcraft,” says Penninah.
“I was lucky, I had very loving and caring mother and husband. My mother was forced to reveal to me about my elder brother (a secondary school teacher) and other family members who were living seizure-free life even though they were epileptic, simply because they were on medication.”
She adds:”My partner was more of a counsellor than a husband. It is at this point in time that I agreed to seek medical attention. By then, it was only Kakamega Referral Hospital that had a special clinic dedicated to people with epilepsy. The clinics at the nearby Matungu Sub County Hospital only started in 2014.”
As Dr Chengo, who holds an MSc in Epilepsy Practice from Leeds University, UK explains, epilepsy is not witchcraft. It is a brain disease characterized by abnormal electrical activity causing seizures or unusual behaviour, sensations and sometimes loss of awareness. There are 40 different types of epilepsy and about 30 syndromes.
Indeed, despite availability of effective and low-cost antiseizure medicines, it is estimated that 80% of the epileptic cases in the country do not seek formal medication, according to studies Kenya Medical Research Institute (KEMRI).
This is due to the misconceptions and myths among most communities in Kenya that epilepsy is not a medical condition.They perceive it as a form of bewitchment. Out of this belief communities seek services of witchdoctors, herbalists, and other traditional alternatives, which may not be effective.
“However, even after accepting and being convinced that my case was a medical condition that could be treated medically, I still struggled for over 10 years. I was initially put on Carbamazepine which I used for many years without change. The doctors then put me on phenotab that did not have much effect as I still got seizures. However, things changed for the best in 2018 when I was put on phenytoin. I have not had seizures since then, 4 years of seizure-free life,” states a joyful Penninah.
This treatable neurological condition has a variety of causes, ranging from genetic, anything that can cause injury to the brain, neonatal insults (injury during the first 28 days of life), infections, sickle-cell disease, stroke, acute encephalopathy, febrile seizures and the unknown, explains Dr Chengo.
For Penninah, this is a hereditary condition in the family considering that her elder brother, uncle and four cousins are epileptic.
Epileptic cases in Penninah’s community are high, increasing and alarming, as is the case in western Kenya and the country in general.
“We have been seeing rising cases of epilepsy in our 12 sub-counties over the last 4 years, from 2977 cases in 2016 to over 14,000 cases in 2019,” observes Dr John Tolo Otieno, the Kakamega County Director of Health Services.
Records from Busia Referral Hospital show a sharp rise in epilepsy cases, from about 650 in 2015 to about 3450 in 2020. Nationally, over 1 million Kenyans are suffering from the disease, according to Dr Chengo.
The World Health Organization estimates that around 50 million people of all ages, sexes, races, income groups and geographical locations, suffer from epilepsy worldwide.
Having overcome the stigma, discrimination, and abuse, Penninah is now a role model, using her own testimony to create awareness and sensitize the community about epilepsy. She is now a pillar of hope to many people living with epilepsy in Matungu.
She has teamed up with Patrick Namatsi, a Community Health Volunteer (CHV) at Matungu Sub County Hospital, the nationwide epilepsy campaign dubbed Angaza Kifafa (Swahili for eradicate epilepsy) that is coordinated by National Epilepsy Coordination Committee (NECC) which was formed in 2010 and brings in all stakeholders in epilepsy care.
The campaign seeks to address the epilepsy challenges – accessibility, availability, affordability, and awareness through training seminars for health practitioners and CHVs. It has reached over 5 million Kenyans in the past 5 years, contributing to demystifying the myths surrounding the condition, and increasing number of people on treatment.
Namatsi who is a beneficiary of the NECC training has seen a huge improvement in adherence and positive living among people living with epilepsy in Mutungu since they embarked on this campaign in 2017. Many people on direct observation treatment are now freely picking drugs for themselves and others who might not make it to clinic days.
“The stigma, discrimination and abuse can break you down if you are not strong mentally or you do not have a very supportive family like mine. Neighbours would advise their children not to play with my children for fear of infecting them with epilepsy. You would be provoked and even insulted but when you hit back, you will be reminded of your epilepsy and told that you are seeking opportunities to faint and have them blamed. ‘Keep epilepsy to yourself’ would be there parting shot. And it really hurt when people look at you as inferior and not worth engaging with because of your condition. I could not attend funerals and other social gatherings out of self-fear and pity,” states Penninah.
“People had even discouraged and warned my husband against marrying me simply because I was epileptic and that this was a genetic condition within our family. But my husband stood by me. He believed that epilepsy was treatable and was determined that I get treated. He ensured that I adhered to my medication as prescribed by the doctors.”
Challenges in treatment of epilepsy
“We are helping people to adhere to medication and precautions. We advise people with epilepsy to avoid climbing trees, being near water bodies (rivers, wells, dams and ponds) alone and cooking alone. We are helping each one to understand their triggers for seizures. Avoiding these triggers and adhering to medication is critical or management of epilepsy,” explains Namatsi.
For instance, one of the identified triggers for Penninah was giving birth. She almost killed her last born as she was hit with a seizure immediately after birth.
It was only through a keen eye of one of the mothers who had also delivered who noticed that the baby was crying but the mother was motionless and eventually called nurses who rescued the child. Penninah was lying on her. But even after the rescue, she could not breastfeed the baby for close to three days. They agreed with the husband not to have more babies for the sake of her health.
Adhering to precautions is sometimes more challenging than adhering to medication, Mrs Josephine Keya from the neighbouring Shiakula Village attests. She got her first seizure in 1993 after suffering a bout of cerebral malaria.
“I was advised not to be cooking alone, not to talk a lot, not to draw water from wells. But I live here mostly with my grandchildren, who are too young to undertake any of these tasks I have been cautioned about,” Keya said.
And it is a challenge that almost cost her, her life. She got a seizure when cooking alone. Her hand hit the sufuria with boiling water. Besides the boiling water burning her hand, the palm remained in the fire, suffering severe burns.
In 2002, Penninah’s little brother drowned after he was hit with a seizure at a nearby river where he had taken their livestock for watering.
Another challenge is that most of Kenya’s public health facilities are not well equipped for detection, treatment, and management of epilepsy.
“Most of the public facilities have no clinics dedicated to epilepsy, lack specialist or knowledgeable clinicians to make the diagnosis of epilepsy, are usually short of antiepileptic drugs and lack equipment for diagnosis of epilepsy,” laments Dr Chengo.
While there are guidelines on management of epilepsy from the National Government, there implementation is not optimal at the County level, according to Dr Otieno.
Like many other counties, Kakamega has no policies at the county level for management of this condition nor policies to monitor supply chains and stock-outs in health facilities and address possible disruptions.
People with epilepsy require treatment with antiseizure medicines for many years, with strict adherence, sometimes for a lifetime. The abrupt withdrawal of antiseizure medicines may result in life-threatening consequences, including status epilepticus.
According to the Epilepsy Foundation, Status Epilepticus (SE) is when a seizure lasts longer than 5 minutes or when seizures occur close together and the person doesn’t recover between seizures. There are different types of status epilepticus: convulsive and non-convulsive.
However, the frequent strikes by doctor and nurses in Kenya have really interrupted the operations of the clinics. For instance, the clinics have not been operational since November last year due to these strikes. And when they resumed in April 2021, they did not have enough medications for the patients.
For 25-year Moses Nalemba, he has been forced to be spending about 100 shillings weekly on medication for his 19-year old wife Farida since December 2020.
Farida even missed out on medication at the last clinic on April 14, 2021 as the clinic had run out of stock for the essential medicines. Farida has been epileptic since 2015 when she was a pupil at Mwira Primary School in Matungu.
According to Namatsi, community-based care should be emphasized to increase access to all people in need of epilepsy services. Social and educational services should provide individualized support to people with epilepsy, throughout the levels of care and should continue, as needed, even when the person is no longer having seizures.
Like for people living with HIV and AIDS, TB and other chronic diseases, there is need to establish support groups at community levels for people living with epilepsy.