Bringing Epilepsy out of the shadows in Africa

Bringing Epilepsy out of the shadows in Africa

Epilepsy is one of the major brain disorders thought to affect between three and four million Africans. Sometimes called a seizure disorder, epilepsy is a chronic medical condition produced by a temporary change in the electrical function of the brain, causing seizures which affect awareness, movement or sensation. The disease affects people in all nations and of all races. Left untreated, like any other disease, it could impede the social development of the patient.

Treatment for epilepsy is available, effective and cheap. Indeed, it is estimated that 70 per cent of patients could lead normal lives if properly treated. The cost of the anti-epileptic drug, phenobarbitone, which alone can control seizures in a substantial proportion of those with epilepsy, could be as low as US$5 per annum. Yet, in Africa up to 80 per cent of people suffering from epilepsy do not receive treatment at all.

This is due to a number of factors, principal among which are: insufficient information about the disease, including the myths and superstition surrounding it; the social and cultural stigma that attach to the disease, and inadequate performance of health systems.

Now in its sixth year, a worldwide advocacy effort known as the Global Campaign Against Epilepsy (GCAE) with the slogan Out of the Shadows, has been helping to remedy the situation. The campaign aims, among other things, to raise public and professional awareness and dispel myths about epilepsy, and to improve health care services as well as treatment and social acceptance of epilepsy as a serious, yet treatable, brain disorder.

One of the outcomes of GCAE in the African Region is the African Declaration on epilepsy. Adopted at the meeting on Epilepsy: a Health care priority in Africa held from 5 to 6 May 2000 in Dakar, Senegal, the Declaration proclaimed epilepsy as a health priority in Africa and called for public health measures to improve its treatment and raise professional and public awareness so as to could counter ill-informed attitudes.

A consultative meeting to discuss the implementation of the GCAE in the Region was held in Harare from 4 to 5 June 2001.

Achievements

The main achievements so far in dealing with epilepsy in the African Region may be summarized as: awareness raising through education and information dissemination at different levels targeting individuals and groups; training of health personnel and other players in the communities (teachers, police, community leaders); integration of early diagnosis and treatment into the general health care system in some Member States; the development of guidelines for the management of epilepsy at primary health care level; the conduct of research, and the initiation of GCAE activities in 50% of participating countries.

However, in spite of these successes, a number of challenges still remain. These include:

  •  Dealing with some social and cultural beliefs contributing to poor "help-seeking" behaviours; 
  • Banishing stigma, known to exist even among health workers;  
  •  Ensuring the availability and accessibility of anti-epileptic drugs;  
  •  Exploring the concept of Drug Banks and how to link these with the Bamako Initiative;  
  •  Exploring the possibility of acquiring anti-epileptic drugs at cheaper costs;  
  •  Strengthening partnerships by improving communication among the different players at country level and creating IBE and ILAE chapters where none exist;  
  •  Encouraging income generating activities for people with epilepsy and their families, and  
  •  Using experience, lessons learnt and currently available "best practices" for better future planning.

The role of WHO and other partners

The World Health organization and other development partners have crucial roles to play in the effort to contain epilepsy in the Region.

These include: development of strategic partnerships which are key to the successful interventions; epilepsy education - for various target groups (decision makers, professionals, people with epilepsy and their families, teachers, and primary health care workers, the police and the general public); research and training; needs assessment and knowledge attitude and practices studies, enquiry into traditional healing approaches, and scaling up the training of health and social workers at different levels.

Others are: the development of guidelines for epilepsy management; collaboration with traditional healers and promotion of non-competitive relationship through information sharing, research and training; the setting up of Drug Banks and generally improving access to cheaper drugs to reduce the treatment gap, and facilitating increased participation by African delegates in international conferences on epilepsy.

Role of the WHO Regional Office for Africa

The WHO Regional Office for Africa will intensify its collaboration with countries by:

  •  Providing technical and financial support for the launch of the GCAE in the participating countries where activities have not yet started;
  • Assuring financial support for the first phase of the Demonstration Projects in selected countries; 
  •  Creating opportunities for the implementation of the GCAE campaign in more African countries; 
  •  Updating country resources on Epilepsy; 
  •  Regularly providing updates on information on epilepsy activities on the AFRO website ( http://www.whoafr.org/mentalhealth/index.html ) and ensuring links with other sites.

For further information, please contact:

Dr. Custódia MANDLHATE
Regional Advisor for Mental Health 
World Health Organization - Regional Office for Africa 
P.O. Box 6, Brazzaville, Congo
Tel: +47 241 39498 Ext.39329 
Fax : +47 241 39501 or 39503
Email: mandlhatec [at] afro.who.int