I couldn’t watch my sister suffer any more

Monday, November 9th, 2020 00:00 |
Fredrick Beuchi. MAIN: Beuchi with hikers at Aberdare’s Elephant Hill summit in preparation of his Mt Kilimanjaro hike for epilepsy awareness. Photo/PD/Milliam Murigi

Milliam Murigi @Millymur1

When Fredrick Beuchi and his family realised his sister- the last born- was epileptic, they could not believe it.

Where they come from, epilepsy is associated with witchcraft and powers of darkness.

Epilepsy is a disorder of the brain that triggers recurrent seizures. It can be caused by different conditions such as birth trauma, infections of the brain, head injuries and a family history of seizures.

His sister, Mercy Kwekwe, was two years old when she had her first seizure in 2010.

Since the family had little understanding of the disease, they watched her suffer without knowing what to do.

This made things worse for her; by the time she had turned six years old she used to have seizure attacks every 20 minutes.

Health talks

“I couldn’t watch her suffer anymore. I needed to do something. I travelled to Nairobi from Mombasa to attend Epilepsy Open Day organised by National Epilepsy Coordination Committee (NECC) to know more about the disease,” he says.

Shortly after the event, his sister was properly diagnosed and put under medication.

Six months later, she had greatly improved, from a seizure frequency of every 20 minutes to one or two seizure attacks in a day.

This improvement was a miracle and it led Beuchi to join other epilepsy caregivers to start an organisation called Foundation for People with Epilepsy (FPE) based in Malindi, Kilifi county, where he is the chairperson.

“FPE is a not-for-profit organisation. Our mission is to raise awareness about epilepsy, advocate for proper medical care through provision of anti-epileptic drugs and counselling, mobilise government and other stakeholders to create policies to guide and protect people with epilepsy and finally empower parents and caregivers with skills to enable them take care of their loved ones with the condition,” says Beuchi.

Together with other actors, he has been staging health talks in schools, institutions, companies, media and churches to create awareness. 

Poor diagnosis

He has also started other initiatives for the same cause. Since 2015, he has been hosting the Epilepsy Afro Fashion Fair, a platform for people with epilepsy to explore their talents in fashion and design.

In 2018, he took up a challenge of walking from Nairobi to Mombasa in 12 days, making stops in various towns to talk about the condition.

This year, he will be cycling from Nairobi to Arusha then climb Mt Kilimanjaro, all towards raising awareness.

Available data shows about one to two people in 100 people in Kenya have epilepsy. The commonest type of epilepsy is convulsive epilepsy, which makes people fall down and have movements of the arms, legs, and body.

A study by Kemri shows in rural Kenya and other African countries, half of the 2,170 people with active convulsive epilepsy are children and 69 per cent of seizures began in childhood.

Fortunately, about 70 per cent of newly diagnosed children and adults with epilepsy can be successfully treated with anti-epileptic drugs. But in Kenya, the diagnosis rate is still very poor.

“The prevalence of epilepsy is high in rural regions compared to urban areas because risk factors for getting epilepsy are high there,” adds Beuchi. 

Increase capacity

He, however, says despite all efforts by different actors, epilepsy is one of the conditions not openly or often discussed in Kenya because of myths and misconceptions, which  FPE is trying to debunk.

In many communities, epilepsy is associated with curses, evil spirits, or punishment for past sins.

People with the condition are said to be possessed by demons, which cause them to convulse, and if anyone touches them during a seizure, they are likely to be infected.

Consequently, people keep their distance when they see someone having a seizure and some families feel ashamed when a member has the condition. People with epilepsy are also said to be mentally ill.

“Epilepsy is highly stigmatised, and this delays care, impairs management and contributes to missed opportunities for employment, education, and even marriage. That’s why many people don’t want to openly talk about it,” Beuchi explains.

He says if the public took the initiative to educate themselves on epilepsy, they would broaden their understanding of the condition, and thereby reduce the stigma.

Currently, FPE runs an Epilepsy Neurology Clinic in Malindi. They want to make it a fully-fledged epilepsy care hospital.

It offers services such as diagnosis and treatment of epilepsy and other neurological disorders, counselling for patients and caregivers, and research and training for epilepsy care. The clinic has satellite centres in Mombasa and Nairobi.

It also wants to increase their capacity in awareness creation beyond Kenya to the rest of East and Central African countries.

 “We also want to create a strong network of partner organisations by and for people with epilepsy to advocate for equal rights and employment opportunities.”

Beuchi’s efforts haven’t gone unnoticed; in 2015, he was nominated as a board member of NECC and in 2019, he was elected as the national secretary to head the committee, a position he is holding even now.

In 2018 , he was nominated for the Epilepsy GoldenLight Award by the International Bureau for Epilepsy. 

More on Health