Awareness: Everything you need to know about Epilepsy and where to go in case you are affected

‘Doctor, I know it is epilepsy, but will I get cured? I have always asked this question but no doctor has ever answered me….’ she asked with seriousness on her face with voice shaking. Anita, 30 years old lady, had a seizure the previous night while asleep. She had suffered many seizures like this from the age of sixteen. Anita was on regular anti-epileptic drugs and insisted that she had not missed her medication. Her concern to know more about the condition, is shared by many people with epilepsy I have treated, says Dr. Eddie Chengo an Epileptologist and current Assistant Chairman of National Epilepsy Coordination Committee,NECC.

Epilepsy is common. It has many symptoms ranging from brief episodes of loss of memory to violent episodes of stiffness and shaking of the whole body while unconscious. Epilepsy affects over 69 million people worldwide, 33 million are children and 90% live in resource poor countries such as those in sub-Saharan Africa. An estimated 500 million people are also affected indirectly, as family members and friends of those who are living with epilepsy. In Kenya about one million people have epilepsy.

Epilepsy Awareness in Kenya

Kenya has made strides in epilepsy awareness. The efforts of the campaign to bring Epilepsy out of the shadows in Kenya are credited to National Epilepsy Coordination Committee (NECC). In 2010, National Epilepsy Coordination Committee (NECC) was formed to tap the expertise, improve interaction, coordinate activities and diminish artificial competition which retards common good in epilepsy work. The members of NECC represent all stakeholders in epilepsy-care i.e. Ministry of Health, international policy makers, pharmaceutical companies, medical professionals, professional organizations/societies, NGOs, CBOs, research institutions, academic institutions and persons living with epilepsy (PLWE).

The organization mission is to strengthen collaboration among stakeholders in facilitating the provision of quality epilepsy-care in Kenya, with a vision of a society where all players work harmoniously for the betterment of epilepsy-care in Kenya. NECC objectives are;

To coordinate the services of NECC members. To identify priority areas for epilepsy work. To coordinate standards in treatment and education on epilepsy. To identify resources and provide information to stakeholders. To promote data collection and archiving systems.

Since its inception NECC has rolled out programs on awareness and policy formation which have been key points of reference to Epilepsy care in Kenya. It spearheaded publication of the first edition of Kenya National Epilepsy Guideline in Management of Epilepsy in 2012. The guideline provides practical solutions in the general care of epilepsy though its dissemination is yet to be realized.

The organization has co-currently organized medical seminars for health practitioners in both public and private sectors, leading road show caravan for an awareness campaign dubbed “ANGAZA KIFAFA”. These events are being held annually in partnership with different County governments across the country. Over the past three years the campaign has been rolled out in atleast 10 counties including; Nairobi, Uasin Gishu, Taita Taveta, Kericho, Nakuru, Meru, Kakamega, Machakos, Nyeri, Kisumu. This year the campaign will be rolled out in Mombasa, Kwale, Kericho and Kajiado. The success of these campaigns have been made possible by generous contributions and support of different stakeholders and sponsors. Bank of Africa have been proud sponsors of the road show caravan since 2015, their effort in supporting Epilepsy Awareness cannot go unnoticed.

The impact of the work done is evident in the many success stories of people living with Epilepsy coming out to share their experiences as well as seeking proper medical care. The family of Mercy Kwekwe attributes the wellbeing of their daughter who was diagnosed with Epilepsy at the age of two years to the efforts made by NECC. She got a chance to meet an Epileptologist who examined her extreme case and provided the best care. Today she is 12 years old and after almost 7 years of not being able to go to school because of the condition she enjoys being in school like the rest of the children, thanks to the first Epilepsy Open Day to be organized by NECC in 2013. Stigma and misconception over the same condition has gradually reduced with family members and friends embracing patients with Epilepsy, however more needs to be done on the same.