#EpilespyAwareness: Beuchi’s Mt Kilimanjaro Challenge

Owing to negative perceptions about epilepsy, those with the disease are always at risk of repercussions and stigma. It is common to find those living with epilepsy, even if they have it controlled, often avoiding to speak about their seizures or revealing that they are living with epilepsy.

They are concerned that the epilepsy stigma could harm their relationships with those around them or injure their prospects for employment. This leaves those who have poorly controlled and severe epilepsy as the ‘face’ of epilepsy in the society.

Epilepsy stigma and stereotypes are hyped by these perceptions and while some clearly misunderstand epilepsy, others who are living with the condition hesitate to seek help.

Fredrick Beuchi Mboya, an activist championing for epilepsy awareness, has taken it upon himself to shout out epilepsy awareness not only in Kenya but across Africa.

In his quest to raise awareness about the disease, Beuchi organized an excursion to Mt Kilimanjaro – cycling from Nairobi and then hiking to the top of the highest mountain in the continent.

Speaking to Eve, Beuchi reveals that he has no intention to slow down on his push for epilepsy awareness as he pursues to take the message to the farthest corners of the world.

“I’m seeking to shout out epilepsy awareness in Africa. Borrowing from past modes of communication where communities passed information by climbing a top trees or hills to shout messages, beat drums or send smoke signals; I also want to climb to the highest point in the continent to shout the message of epilepsy awareness to the entire continent,” he said.

Dubbed 'Beuchi’s Mt Kilimanjaro Challenge,' the expedition aims to advocate for the rights of people living with epilepsy (PLWE) and rally the public alongside regional and international media fraternity to highlight issues surrounding epilepsy.

It also seeks to help translate basic facts about epilepsy in native languages across the continent, and in conjunction with partners, support children with epilepsy access medication.

This will be Beuchi’s second epilepsy awareness expedition. In 2018, he walked 482km from Nairobi to Mombasa over 12 days as part of his volunteer work to raise awareness about epilepsy. Back then, he says, he was faced by a number of challenges including inadequate preparation that left him worn out for days after the walk.

Building on his experiences from the walk, Beuchi has been preparing for the Beuchi’s Mt Kilimanjaro Challenge for a better part of this year. He has had two physical training camps as well as a number of pre-activities. Together with his team of cyclists who will be accompanying him on the trip, they have done 100km of cycling, from Ngong town to Isinya and back.

Flanked by those supporting his course, Beuchi also had a hiking and hill climbing excursion at Elephant Hill on the 4th of October as part of the training and preparation ahead of the main challenge slated for the 17th of November.

A sneak peek at the provisional itinerary for the trip to Mt Kilimanjaro reveals that it will start with a press brief on the 16th of November at Bank of Africa headquarters in Westlands, Nairobi, after which the team of cyclists taking part in the challenge will spend the night at a city hotel ahead of an early morning flag off at Ngong Town on 17th November – day one of the four-day cycling challenge.

Beuchi and his team will cycle from Ngong town through Kiserian and Isinya to Kajiado town where they will stop for the night. On 18th November, day two, they will start at Kajiado town and end at the Namanga border where they will again rest before crossing over to Tanzania the following morning to do the Namanga-Longido stretch. The last day of cycling, 20th, will see them cover the distance between Longido and Arusha town.

The team will then have a two-day rest before heading to Moshi on 23rd and begin their climb to the top of Mt Kilimanjaro on the 24th via the Machame route.

Beuchi, who doubles as the National Secretary of the National Epilepsy Coordination Committee (NECC), Kenya, and a counselling and psychology support at the Epilepsy Neurology Centre Hospital in Malindi, describes epilepsy disease burden as one of the agendas he is championing to help alleviate. As the National Secretary of NECC, he is roping in the government, both at the national and county levels, in the push to have good epilepsy medication at public hospitals.

And having indirectly suffered the consequences of myths about epilepsy when his youngest sister who lives with epilepsy was accused to be associated with witchcraft, Beuchi also seeks to dispel these rumours about the condition.

A fan of traveling and socializing, Beuchi also adds that looking after a sister living with epilepsy has given him the push and drive to create awareness around the disease. With a background in theology, Beuchi reiterates the need to create awareness about the condition as some communities’ still associate epilepsy with witchcraft, a discrimination he admits to have come face to face with.

“Where I come from, epilepsy is associated with powers of darkness. There, it is believed that when one suffers from a condition like epilepsy, then their family have probably given them up to the powers of darkness in return for wealth. This is what they thought was happening to us.” He says.

NECC, an umbrella body that brings together all Epilepsy care stakeholders in Kenya, has been behind Beuchi in both his awareness campaigns and without NECC backing, he admits that achieving his objectives during these endeavours would be futile.

However, over time, the body is still pushing to receive enough support to carry out its mission as other diseases, such as cancer, grouped alongside epilepsy as Non-communicable diseases (NCDs), are receiving a fair share of awareness and concern, unlike epilepsy, an aspect that only adds to the need to enhance epilepsy awareness.

Speaking during the launch of the 2020 Breast Cancer Awareness Month, Dr Catherine Karekezi, a technical advisor at the Non-Communicable Diseases alliance of Kenya (NCDAK), reiterated the need for other NCDs to be given adequate publicity, particularly during this pandemic.

“As we acknowledge the work that the Ministry of Health and the government has done in terms of cancer prevention and cancer treatment, we would like to urge that all NCDs are important and as we prioritize cancer, we should also look to prioritize other NCDs.

"The coronavirus pandemic has shown the gaps in the healthcare system in terms of supply chain, health care providers and it has also given us an opportunity to relook our health care systems to see how these gaps can be filled to ensure that NCDs’ prevention and care, and rehabilitation are prioritized,” Dr Karekezi said, speaking on behalf of the NCDAK.

According to Dr Karekezi, other than having an inclusive policy, there is also the need to empower those living with NCDs (PLWNCDs) to advocate for the needs of their conditions and their families and that the universal health coverage should not leave behind any NCD even as focus in put in given diseases. This, she says, will ensure that no one is left to suffer or go into poverty because they are trying to take care of their non-communicable disease.

Working closely with NCDAK and other likeminded bodies as he continues to drum support and raise awareness about epilepsy, Beuchi promises to embark on planning his third venture immediately after completing Beuchi’s Mt Kilimanjaro challenge. And for the next one, he is planning to take the message of epilepsy awareness to the global stage by taking part in an international marathon with his eyes set on either the 2022 Boston Marathon or the London marathon.