Phone Application Gives People with Epilepsy a New Lease of Life

Like any public health facility, the first sights that capture attention of visitors to Karen Health Centre are huge posters with health messages pinned on the walls and notice boards, and groups of patients queuing on rows of wooden benches outside several consultation rooms.

However, within the compound there is a distinct group waiting outside a room designed from an old container. Those in the queue show very remote signs of illness, if any, as they chat jovially and exude energy.

This is one of the three epilepsy clinics run by the Kenya Association for the Welfare of People with Epilepsy (KAWE), a non-profit making organization, which addresses issues of people with epilepsy – a condition characterized by recurrent seizures.  

The organization, which is a grantee of the Kenya Community Development Foundation (KCDF), runs two other clinics in partnership with Nairobi County Council in the sprawling slums of Mathare and Huruma.

A medical officer at the organisation, Mr Steve Kimwaki, explains that the clinics, which operate for only one day of the week have been deliberately set up without the usual symbols and health messages that characterize health facilities because of the stigma associated with epilepsy.

 “People with epilepsy suffer stigma and discrimination due to a lot of misconceptions and myths about the disease. We neither follow the medical officers’ dress code nor decorate the walls with health messages because we want the patients to feel welcomed and free from the stigma they suffer out there in the society. ” Says Kimwaki.

Among the patients in the queue is 16-year-old Kenneth Mutisya (not his real name) who has been accompanied by his elder sister, Agnes Mwikali, 32.

Agnes narrates about her brother’s condition – Mutisya, who lives with their mother in rural Makueni District. Mutisya begun experiencing recurrent seizures at the age of five and to date, he has never been taken to any health facility as the family never knew his condition could be treated.

“All we could do every time he experienced seizures is to pin him to a seat where he would pass-out for about 10 minutes. The seizures happen every time he touches cold things or bathes in cold water.” Says Agnes.

Agnes brought him to the clinic following a referral by a friend who confided in her that she too used to suffer from a similar condition but the seizures stopped after starting off on medication.

She explains that in their Kamba community, it is believed that people with epilepsy are bewitched or cursed and the only remedy for such a victim is a ritual cleansing ceremony which involves the epileptic patient riding on the back of a goat that is suddenly beheaded.

Mutisya is however lucky not to have gone through the ritual because of her mother’s strong beliefs in Christianity which neither advocates nor condones any form of witchcraft remedies.

Waithera Nderu, 32, was diagnosed with epilepsy at the age of 12 and since then, she has been on medication. She laments the high level of stigma and discrimination meted against her as a result of the condition, which she claims has caused her job opportunities even though she emerges top in interviews.

“People believe epilepsy can be transmitted from one person to the other through close interactions and this always turns away friends; one has to contend with loneliness. Employers also do not want to indulge people with the condition as they are seen as a burden to the company both financially as well as relationally.” Says Waithera, who runs a bar in Kitengela where she lives.

“It was very difficult for me to keep on asking for days off to go to hospital hence I decided to quit my last job as an office manager and run my own business which has the flexibility that I need to manage my disease.” She says.

Before Waithera was introduced to the KAWE epilepsy clinic, her major challenge was drug adherence due to the high costs of purchasing the medication. A tablet costs Ksh1 and a patient may spent about Ksh1000 ($10) for a monthly dose.

“There are several occasions when I failed to take my medication as my single mother could not provide for the family’s basic needs and still spare some money for the drugs.” Explains Waithera who has two siblings.

However, the burden of spending money on medication was lifted off Waithera’s shoulders when she found out about the clinic, which she visits regularly for drugs.

The clinic is part of the second phase of a project aimed at improving epilepsy management services in public health facilities funded by KCDF at a cost of Ksh1.3 Million. The project involves enhanced management of patients’ data, training of health providers on epilepsy management and increasing the number of patients accessing effective epilepsy services.

The project’s coordinator, Rosemary Gathara, says 120 clinical officers and nurses have been trained on epilepsy management under the programme so far. But the number is a far cry since there are over 6,000 health facilities in the country which need such services for health providers.

According to World Health Organisation (WHO) there are about one million people with epilepsy in Kenya out of which only 200,000 have access to treatment as there are very few health facilities that take care of people with the condition.

To meet the shortfall, the organization is working with the Kenya Medical Training College (KMTC) to review the curriculum to include management of epilepsy as a specific area of study. This will enable KMTC, which has colleges across the country, increase the scope of health provider with skills to manage people with epilepsy.

 Although KAWE’s primary roles are advocacy on the plight of people with epilepsy, research and lobbying- it is undertaking training of health officers and provision of epilepsy medicine to bridge the gap that has been unattended by other health providers and government hospitals.

“Health centers should be able to treat epilepsy the way they treat other diseases. The gap is unnecessary because it is not a cost issue as drugs used to treat the condition are also used for treatment of other diseases and some are on the list of essential drugs.” Says Rosemary.

The first phase of the project dubbed M-Kifafa Mobile Technology for Epilepsy Training and Support involved developing a mobile phone platform to support e-learning for primary health workers, epilepsy awareness & treatment compliance information to patients and care givers.

The system, developed in 2013, runs on USSD and SMS platforms and is designed to use mobile phones to help patients manage their epilepsy as well as enable people to receive information on locations of KAWE epilepsy clinics. The system additionally provides first- aid information on how to manage people experiencing seizures and the data mined from the software is sent to the Ministry of Health to aid in the provision of anti-epilepsy drugs to those that need them. The mobile platform is supported by mobile service provider Safaricom.

Rosemary says when the system was rolled out in 2012, the number of patients visiting the KAWE clinics doubled. The busiest clinic is the Huruma Health Centre where about 100 patients visit every Friday. Presently, over 13,000 patients are registered at KAWE clinics.

The project targeted 800 people with epilepsy (600 children and 200 adults) in Korogocho, Mathare, Kawangware and Kibera slums of Nairobi. It was also expected that 60 health workers would actively engage with the interactive platform for epilepsy management training and disseminating information to the target beneficiaries via mobile phones.To make the programme sustainable, KAWE charges Ksh1.50 for every SMS received by the patients.

KAWE and its global associates, the International Bureau for Epilepsy (IBE) and International League Against Epilepsy (ILAE) are currently lobbying to have epilepsy recognized by World Health Organisation (WHO) as a global burden. This will ensure there is coordinated action at the country level to address its health, social and public knowledge implications.