At about 2am in a Mombasa hotel room, Dr Phyllis Kimani heard a sound she had never heard before. She was on vacation and her 11-month-old daughter, who had been feverish during the day, had become stiff and was gurgling.

Dr Kimani’s mother – with whom they were sharing a room – ran to reception for help while the young mother held the baby, frightened.

Dr Kimani was already a UK-trained pharmacist. But in that instant, the textbook knowledge did not immediately offer recourse.

“I had not realised that this was a seizure,” Dr Kimani, 40, tells Nation Lifestyle. They rushed the child to the hospital, where her temperature was found to be about 40 degrees Celsius. Tests ruled out meningitis, and doctors said a viral infection had triggered a febrile seizure.

The Kenya Association for the Welfare of People with Epilepsy (Kawe) explains that febrile seizures are triggered by high fevers and that they start when a child is between six months and five years.

Stakeholders cite myths and misconceptions as barriers to epilepsy treatment and care in Kenya

That eventful night 12 years ago became the beginning of a learning curve for Dr Kimani. Whenever her eldest daughter later developed a high fever, another seizure was likely to follow. As the girl reached school-going age and encountered more infections, the episodes became frequent enough to make doctors issue daily medicine.

Age of six

Her daughter was eventually diagnosed with generalised epilepsy with febrile seizures plus, or GEFS-plus, a condition in which fever-related seizures continue beyond the age at which most children outgrow them.

“She has the type of seizures that go past the age of six but are expected to resolve by her mid-teens. We have kept her on medication, and she remains seizure-free. When the time is right, we will taper off her medication and stop it,” said Dr Kimani.

Epilepsy struck the family again. Dr Kimani’s youngest daughter, the fourth born, was about 18 months old when a house help called to say she had developed a fever and convulsed.

The family did not immediately begin long-term treatment because simple febrile seizures can occur in young children. But after further episodes, and in light of the older sister’s history, Dr Kimani and the child’s doctor agreed on medication.

The younger girl has also been seizure-free for two years, and the family has begun discussing whether treatment can eventually be withdrawn.

Read: The unspoken struggle of living with epilepsy

“Each of my daughters takes a tablet in the morning and one in the evening every day,” she says.

Dr Kimani lives and works in Leeds with her family, and spending time between Leeds and their home in Kabete, Kiambu County, she has used her experience of epilepsy in the family to start an organisation, NeuroReach Africa, that seeks to offer answers to parents whose children have been diagnosed with epilepsy.

“Between the time you get that diagnosis and the prescription and then the next clinic visit, there’s a big time gap. And that is where there’s no support. I thought we need an organisation that focuses purely on this gap because that is where you’re going to be managing the seizures at home by yourself. You’re not going to be with your clinician. That is where you have your questions in the middle of the night. That is where you are dealing with stigma and worries about school,” says Dr Kimani.

Through the organisation that has a presence in Kenya and Zimbabwe, she has become an epilepsy awareness champion.

“I am a pharmacist. I knew what a seizure was. But when it happened, I didn’t know what to do. I wondered, if I could not manage this with a pharmacy degree, with a phone full of doctors’ numbers, with a means to reach a hospital, what about the mother in a village in Kenya who has none of that?”

Through two children’s books she has released, she is educating the public on epilepsy.

“We are still learning the science of epilepsy, but the myths are thousands of years old. Some believe it’s a curse. Some believe it’s contagious. Some believe a child with epilepsy cannot learn.”

Kawe, which is recognised by the Ministry of Health, offers four key steps to be taken in case someone has a seizure. They include placing something soft under the patient’s head, moving sharp objects away to avoid injury, and timing the seizure.

The first aid administrator should not put anything in the patient’s mouth and shouldn’t try to restrain the movements of the patient. Equally, avoid giving food or water to the patient.

Dr. Phyllis Kimani, founder of NeuroReach Africa, pharmacist and children’s book author, during an interview at Nation Centre in Nairobi on August 20, 2026.

Photo credit: Bonface Bogita | Nation Media Group

“Once the shaking stops, gently turn the person onto their side. This helps keep the airway clear and prevents choking,” says Kawe, which has been in existence since 1982.

“Speak calmly and reassuringly as the seizure ends. Loosen tight clothing around the neck to assist breathing.”

If the seizure lasts longer than five minutes, or if another seizure starts immediately, call emergency services.

Common myths

In the glossary pages of the storybook “The Day the Purple Kite Flew”, Dr Kimani offers children an explanation of what causes seizures.

“Epilepsy is a common condition where the brain sometimes sends too many signals at once, causing a seizure. It is not contagious, it is not a curse, and most children with epilepsy learn, play and live like everyone else.”

Asked her how a parent can explain a seizure affecting a child to their sibling, Dr Kimani says: “Just tell them that a seizure is a small storm in the brain and that it will pass. It does look scary, but their sibling will be fine.”

Dr Kimani studied pharmacy in the UK, and she says there is a world of difference regarding the management of epilepsy in children.

Read: How a tech enthusiast turned epilepsy into a blessing in disguise

“In England, there is an epilepsy action plan for each child, and this is focused on the school environment and also the home. In case a child has a seizure, there’s a plan of what first aid is given. In Kenya, there’s no formal training that teachers receive about seizure first aid. We have started talks with the Ministry of Health to see how this first aid training can be extended to schools,” she says.

Dr Kimani also notes that a child with epilepsy should not be pushed out of class, sports or friendship.

The World Health Organisation estimates that epilepsy affects around 50 million people worldwide. Of those, nearly 80 per cent live in low- and middle-income countries, and up to 70 per cent of people with epilepsy could live seizure-free if properly diagnosed and treated.

Ministry of Health data released in 2014 indicated that the prevalence of epilepsy is 18.6 per 100,000 Kenyans. Some players say the number is higher as the government concentrated only on the severe forms of epilepsy.

Dr Kimani believes children are the ideal audience for epilepsy awareness.

“By the time we are grown, most of us have already inherited [notions] from our parents and neighbours. Children are still open. If a child learns at age six that a seizure is a little storm in the brain and that it passes, they don’t need to unlearn anything at 26.”

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eondieki@ke.nationmedia.com