A discovery in Fredrick Beuchi’s family in 2009 changed his life forever.
His sister, who was two years old then, was diagnosed with epilepsy, a disorder of the brain characterised by repeated seizures.
Normally, the brain continuously generates tiny electrical impulses, which send signals for different functions of the body in an orderly pattern.
But when this orderly pattern is altered in any way, it can lead to a sudden and uncontrolled burst of electrical activity in the brain called a seizure.
A seizure may lead to a sudden change of behaviour, movements, feelings and levels of consciousness.
This condition made Beuchi, 34, eager to know more about it - and an epilepsy awareness activist and caregiver was born.
“Now 16, we have been able to manage the condition for about six years. She is leading a very normal life right now,” Beuchi tells the Star.
Even though his sister’s condition made him develop a passion about epilepsy, his journey proper of raising awareness about the brain disorder started in 2013.
“My 10-year activism in epilepsy awareness gave me an opportunity to be nominated as a board member of the National Epilepsy Coordination Committee in 2015,” Beuchi says.
In 2019, he was elected as the board secretary, a position which he has held for almost four years.
Beuchi does epilepsy awareness through sports expeditions.
The first was a walk from Nairobi to Mombasa in 2018, which took him 12 days. It was meant to shed more light on epilepsy across the country.
“I realised epilepsy has been surrounded by myths and misconceptions. People think it is witchcraft. I thought it was only a perception by the people of the Coast, which is my home, but I realised the perception is across the entire country,” he says.
The walk was unique and hard, and he feels that is the reason people were interested in it. That helped in raising the awareness.
The success of the walk made him resolve that he would be doing an expedition after every two years.
In 2020, he did another one, this time cycling from Nairobi to Arusha in Tanzania, which took him three days, after which he rested for two days and then climbed Mt Kilimanjaro, which took him seven days.
“The idea was to reach out to about 10 million people with information about epilepsy. At the same time, it was an opportunity to raise funds to support children with epilepsy. It was a success,” Beuchi says.
Epileptic medication is very expensive, he says, making it only accessible to a few.
Children are at a higher risk of getting epilepsy because one of the causes of the disorder is birth complications.
His efforts to raise epilepsy awareness through expeditions got recognised by the International Bureau for Epilepsy, a non-profit organisation based in the US which seeks to improve the social condition and quality of life of people with epilepsy and those who care for them.
In 2021, Beuchi was nominated and won the International Golden Light Award, which is given to seven people globally, one in every continent, for the work done in raising awareness about epilepsy in one’s country or continent.
He received the award in Paris, France, during the 35th International Epilepsy Congress.
When he came back, he was also nominated for and won the Young African Epilepsy Ambassador awarded by the Epilepsy Alliance Africa during their first congress in Marakech, Morocco.
The two awards motivated Beuchi.
He was to do his third expedition in 2022, which was running in the BMW Dallas Marathon in the US.
“I was to do the 52km ultra-marathon but I got delayed in securing a visa and missed the opportunity,” he says.
He will however do the Vitality London 10,000 which will take place on Sunday, September 24, 2023 on its traditional iconic course, starting on The Mall, going out through Trafalgar Square to the City of London, passing some of the capital’s most famous landmarks, before finishing in front of Buckingham Palace.
This year, the epilepsy awareness activist and caregiver won the Global Epilepsy Ambassador Award.
This award was given to 12 people globally, including two in Africa – Beuchi and a doctor from Tunisia.
The award ceremony will take place during the International Epilepsy Congress to be held in Dublin, Ireland.
Beuchi’s idea is to make the epilepsy conversation go beyond borders to become a global conversation the way climate change is at the moment.
“The biggest thing I’m pushing in Kenya is to demystify the myths and misconceptions in the community about epilepsy. But most importantly, I would like to see that anti-epileptic drugs are made easily and cheaply available in our hospitals in Kenya,” Beuchi says.
There are over 40 types of epilepsy. Thus, one type of drug may not work for a particular type of epilepsy, and coupled with the expensive nature of the drugs, it might be financially draining, but all for nothing.
“Contrary to popular belief, epilepsy is not a disease. It is a condition, meaning anyone at any point of their lives can get epilepsy. It has something to do with brain damage.
“For instance, my sister got epilepsy after suffering from cerebral malaria. It started as normal malaria and got escalated to cerebral malaria. We successfully treated the cerebral malaria but it had already affected the brain and left her with the epilepsy,” Beuchi says.
Brain damage may be as a result of infection like cerebral malaria or meningitis or through the birth complications like labouring for long, the baby coming out legs first or not crying (crying helps in self-dependence in terms of circulation of oxygen to the brain), or even through hard traumas to the brain like during an accident.
In Kenya, there are 1.5 million people who have epilepsy and globally the number is around 100 million, according to Beuchi.
“Meaning in every 100 people, two or three have at least one type of epilepsy,” he notes.
Beuchi says the problem with epilepsy is that in most cases, one cannot live an independent life.
The condition has been categorised among non-communicable diseases, although it is not a disease per se.
“It is also recognised as a disability. This is because when one gets seizure they even lose consciousness and they cannot be independent. In most cases, it is required that an epileptic person always be with another person to help them in one way or another, should an attack occur,” Beuchi says.
However, he says, should there be drugs that can manage the condition easily available, an epileptic person can live a normal life.
There will only be small restrictions in certain aspects like sports or driving, unless one gets a clean bill of health from a doctor.
For instance, for an epileptic person to be allowed to drive a vehicle, they must be seizure-free for not less than three years continuously.
There is stigma against epileptic persons which prompted a campaign called “Seizure Smart Schools”.
“We realised that in children with epilepsy experience a lot of stigma in schools to the extent that when an attack comes, instead of the friends or colleagues helping them, they run away,” Beuchi says.
He explains that this is because many learners do not have sufficient information about this condition and whenever they see their colleagues experience attacks they think being close to or getting into contact with them will also make them get the condition.
“From there, the victims feel stigmatized. But we cannot blame the children because they are not aware,” he says.
The epilepsy champion says one can tell when an attack is imminent.
He says in most cases, many of those who get the generalized seizure, which is falling down and experiencing convulsion, will start felling headaches or the eyes will start getting squint.
Some will start having twitches in the hands.
“There are some who may not be able to tell when an attack is imminent because they occur too abruptly,” Beuchi says.
He says there are triggers that should be avoided.
“For instance, although my sister has been seizure-free for more than six years, her main trigger is excitement. I cannot surprise her with something. Ife she gets overexcited she will have a seizure attack,” Beuchi says.
Other triggers or contributory factors to attacks include drugs and alcohol intake.
Hormonal imbalance, especially in females, due to pregnancy or menstrual flows, may also trigger an attack.
“Any infection may also be a trigger to a seizure,” Beuchi says.
For photosensitize epilepsy, flashlights may trigger an attack.
“That’s why there are programs on TV that issue warnings before they start because they have flashlights that may trigger an attack in photosensitive epileptic persons,” Beuchi sauys
