When Geoffrey Hinga was twelve years old, epilepsy entered his life without warning, and it swept his family into a storm of fear and confusion. His mother, desperate to understand why her son’s body would suddenly betray him, moved from one church to another and from one herbalist to another, clinging to the hope that someone could explain what was happening. In her distress she wondered whether his illness might be a curse, and she searched for a remedy in every unfamiliar concoction she could find, hoping that somehow one of them would bring relief. Hinga, now thirty-two and working as a hairdresser and beautician, remembers those years as a blur of uncertainty, a time when his body seemed to belong to someone else. The death of his father when Hinga was in Standard Eight added an emotional wound that he believes may have helped trigger the first seizures, though no one ever established a clear cause. As he moved through school, the seizures became more serious and more frequent. Some classmates began avoiding him, unsure what to do or say, and teachers often had no idea how to respond when he collapsed in class. The fear around his condition settled into his everyday life, and even now, when he walks outside, he cannot shake the feeling of being vulnerable. He knows that a seizure can happen at any moment and leave him completely exposed in a world that is not always kind to those who seem different.
The road is one of the hardest places for him. When a seizure strikes in public, Hinga says he is completely at the mercy of strangers. Some people take advantage of the moment and steal from him, while others simply stand there because they do not know what to do. He has fallen on the road and hurt himself badly, and those memories stay with him. For Hinga, the danger is not only the seizure itself but the way people react to it. Fear, misinformation and stigma can turn a medical emergency into an experience of humiliation and isolation. In some communities epilepsy is still associated with curses, witchcraft or supernatural forces. Such beliefs can lead families to hide a diagnosis, spend time and money on unqualified practitioners, or delay taking a loved one to a health facility. Others avoid talking about the condition at all because they are afraid of rejection. Hinga’s own early experiences with medical care were painful. He was eventually referred to Kenyatta National Hospital, where the cost of medication became a heavy burden for his family. The drugs caused side effects, including pain around his kidneys and redness in his eyes, and he continued to have seizures without understanding what made them worse. A turning point came when a family friend introduced him to the Kenya Association for the Welfare of People with Epilepsy, known as KAWE. There he received counselling, joined a support group, and found more affordable medication. Before his seizures came under control, he could experience as many as three in a day or ten in a week. Today, he has gone nearly two years without a seizure, but he remains faithful to his treatment and follows his doctor’s advice, knowing that stopping medication on his own could bring the seizures back. He has learned to watch for sleep deprivation and stress, which can trigger his symptoms, and he shares his story on social media to encourage others and raise awareness. His journey shows that epilepsy can be managed with the right treatment, support and understanding, but also that fear and ignorance can make an already difficult condition much harder to bear.
For Nicolas Otieno, a clinical epileptologist at KAWE, Hinga’s story illustrates both the human cost of epilepsy and the power of support. Otieno believes that public education, training for health workers, affordable treatment and an end to stigma are all necessary if epilepsy care is to improve. Epilepsy, he explains, is a neurological condition characterised by a tendency to experience recurrent, unprovoked seizures. A seizure occurs when there is a sudden burst of abnormal electrical activity in the brain, temporarily affecting a person’s movements, awareness, behaviour or sensations. Some seizures cause falls, loss of consciousness and jerking, while others involve brief staring, unresponsiveness or repetitive movements. Focal seizures begin in one area of the brain, while generalised seizures involve both sides. Medical assessment is essential, because not every seizure means epilepsy, and treatment depends on the cause and type of seizure. Otieno stresses that awareness must begin at the community level and extend through the health system. Health care workers, especially those in primary care, need regular training so they can recognise possible seizures, make appropriate referrals, and help patients manage their condition over time. He is also careful to say that awareness alone cannot close the gap between identifying a problem and receiving proper care. Without resources to support diagnosis and treatment, public education can only go so far. His words are a reminder that lasting change requires compassion, investment and a willingness to see epilepsy not as a shameful secret but as a medical condition that can be treated and managed.
There are simple things every person can do when someone has a seizure, and these actions can make the difference between injury and safety. The first step is to remain calm. Move dangerous objects away and place something soft under the person’s head to cushion it and reduce the risk of injury. Tight clothing around the neck can be loosened, but the person should not be restrained or forced to stand. One of the most dangerous myths is that something must be put into the mouth to stop the person from swallowing their tongue. This is false. A person having a seizure cannot swallow their tongue, and putting a spoon, a stick or fingers into the mouth can cause serious injury. Food, water and oral medication should never be given during a seizure. When the seizure ends, if the person is still not fully conscious but is breathing normally, gently turn them onto their side and stay with them until they recover. Emergency help is needed if the seizure lasts five minutes or more, if seizures repeat without recovery, if there is difficulty breathing or a serious injury, or if it is the person’s first known seizure. Seizures that happen in water or during pregnancy also require urgent medical attention. These simple guidelines can replace fear with action. Knowing what to do does far more than protect the body; it also sends a message to the person and to everyone watching that epilepsy is not something to hide or be ashamed of. In a moment when a stranger falls to the ground, a calm and informed witness can turn a frightening scene into a safe one, and that kindness can stay with a person long after the seizure is over.
Diagnosing epilepsy can be far more complicated than it sounds, especially in places where specialists and medical tests are scarce. Dr Symon Kariuki, an epilepsy expert at the Kenya Medical Research Institute and the African Population and Health Research Centre, points out that some people develop epilepsy years after a head injury. A person may be injured and then forget about the incident, only to begin having seizures several years later. By the time they see a clinician, they may not think to mention the old injury, and this makes it harder for doctors to identify the origin of the seizures. CT scans and MRI can help doctors investigate epilepsy, but these services and specialised training are limited, especially in rural areas. Missed diagnoses and stigma keep many cases from being recorded accurately, leaving gaps in health data that policymakers need to plan services and allocate resources. Kariuki also warns that epilepsy can sometimes resemble a mental health condition. Certain focal seizures, especially those associated with the temporal lobe, may involve unusual sensory experiences, changes in awareness or strange behaviour. A person may report hearing sounds or voices, seeing things that others cannot confirm, or experiencing smells and tastes that are not present. Epilepsy and mental health conditions can also occur together, which makes careful diagnosis and coordinated treatment very important. In addition, people with epilepsy may live with other health conditions such as depression, diabetes or high blood pressure, and these can complicate care. Some medicines can interact with antiseizure drugs or affect seizure control, so clinicians need to consider a patient’s full medical history and review treatment regularly. Epilepsy can also affect memory, learning and communication, while stigma may limit access to education, jobs and relationships. Yet Kariuki cautions against assuming that everyone with epilepsy has intellectual difficulties or cannot succeed academically and professionally. Many people with the condition study, work and thrive when they are given respect and the right support.
Flashing lights can trigger seizures in some people with photosensitive epilepsy, though this sensitivity does not affect everyone living with the condition. Sleep deprivation, missed medication and alcohol may also make seizures harder to control, so understanding personal triggers and following medical advice is important. Kariuki estimates that around seventy per cent of people with epilepsy respond to treatment, while about thirty per cent may continue to experience seizures despite medication. This means that many people can live well with epilepsy, but not everyone finds relief with the first drug or treatment plan they try. Nearly two million Kenyans may be living with epilepsy, yet the majority remain undiagnosed and untreated because of stigma, cost and weak health systems. For people like Hinga, change came through access, information and compassion. He now speaks openly about his condition, urging parents to support children with epilepsy rather than hide them out of fear. He wants other families to understand that epilepsy is not a curse and that a child with the condition can still grow up to work, dream and contribute to the community. His message is not only about medication; it is about refusing to let fear define a life. The challenge ahead is shared. Communities must replace superstition with understanding, health systems must invest in training and diagnostic tools, and ordinary people must learn what to do when someone has a seizure. None of this is impossible. With awareness, affordable medicine and a willingness to stand beside one another, people with epilepsy can receive the care and dignity they deserve. Hinga’s journey, from childhood confusion and painful stigma to a life of purpose and advocacy, is proof that even a condition wrapped in misunderstanding can be faced with courage. The road is not always easy, but no one should have to walk it alone.