What is epilepsy?
Epilepsy is a neurological disorder characterized by abnormal electrical activity in the brain resulting in repetitive seizures. Epilepsy has been considered the world’s most common serious disorder of the brain, according to the World Health Organization (WHO).[i]
WHO reports epilepsy affects 50 million people worldwide, of which 30 million are in Asia and 10 million in Africa. In Cameroon, epilepsy is present in all ten regions and represents 16% of neurological consultations in adults and 2% of those in children.[ii]
Epilepsy can be managed but not cured with medication. However, for over 30% of epileptics, there are no effective medications.
– Epilepsy can happen to anyone, no one chooses to have it
– Epilepsy is not witchcraft, not possession by the Devil, not God’s punishment
– People with epilepsy can live full, rewarding lives
– Epileptics should be treated equally, not marginalized
– Everyone needs to know how to help during a seizure!
Why should we care?
Cameroonians living with epilepsy are frequently subject to social stigma and exclusion, and this contributes greatly to the burden associated with epilepsy.
Living with epilepsy can give rise to many challenges, in addition to the medical burden. These include social and psychological stress on the individual and family members, missed educational opportunities, and underemployment or unemployment.
However, efforts for greater community education on epilepsy can have a significant positive impact. Reducing social stigmas and increasing opportunities for individuals is key to improving quality of life for epileptics.
Living with epilepsy in Cameroon
In Cameroon we face a number of challenges when it comes to improving the quality of life of those affected by epilepsy:
- Lack of comprehensive data on breadth or depth of the problem means the disease is not getting the attention or funding it deserves, and there is no concrete plan of action to address it
- Lack of dedicated funds leads to poor health facilities; epilepsy patients are not offered assistance under any health care coverage
- Low awareness and lack of adequate training for medical personnel has lead to a treatment gap, and poor understanding of the disease among health providers
- The high transfer rate of the few skilled medical personnel between different regions creates a lack of continuity in epilepsy case management
- A high level of poverty means most families cannot afford medical treatment; families with limited funds will also divert investment away from epileptic children
CAMAAY (the Cameroon Association of Active Youths) is working to change this. We strongly believe that people living with epilepsy are entitled to a quality of life no less than that expected by the majority of Cameroonians. We want to see a nationwide approach, working with and for people with epilepsy, to deliver real and sustainable change.
Through our program, we plan to educate communities in Cameroon’s Northwest region on the realities of living with epilepsy, seizure care and management, treatment options, and opportunities for growth and development. Better information will help epileptics to make informed decisions about their treatment and lifestyle.
Act local; think national – make a difference!
CAMAAY welcomes the opportunity to work with Cameroonian health institutions to improve service delivery and quality of life for people living with epilepsy.
While at the core our project will be focused locally, working with individual communities, it is necessary to think nationally in order to develop a sustainable plan for epilepsy care and support throughout the country.
Epilepsy is a highly complex condition in its causes, presentation, and treatment, and requires both medical and non-medical management. The psychosocial, educational, and economic impacts create particular challenges for the delivery of social, community and health services.
Building on principles of social inclusion, CAMAAY aims to foster realistic
and creative strategies to ensure that individuals affected receive equitable
care and access to services nationwide.
[i] WHO reports that the burden of epilepsy accounts for 0.5% of the global burden of disease. This can be compared with Multiple Sclerosis at 0.1%; Breast Cancer at 0.4%; or Diabetes at 1.3%.
[ii] The prevalence of epilepsy in Cameroon is higher than that of the industrialized world with values exceeding 30 per thousand (Source: Kamgno et al., Epilepsia 2003;44:956). The prevalence of epilepsy appears to be especially high in the Momo Division of the Northwest Province of Cameroon.