Epilepsy is still highly stigmatised in Kenya and many communities believe it is due to witchcraft or curses, that it is contagious, and that anyone who touches the patient or his excreta will acquire the disease themselves. Therefore, the patient and the family are very unpopular and isolated. Many people do not believe in modern medicine and therefore will foremost seek help from a witchdoctor, a herbalist, offerings, and prayers. They only seek modern medicine when sometimes it’s too late. The common belief is that once a person develops epilepsy the disease will eventually kill him, and so it doesn’t come as a major surprise to many when the victim dies from SUDEP.

SUDEP is a condition that occurs more often than it’s talked about here in Kenya. From reports gathered at one of our epilepsy clinics (Karen clinic) that has 600 registered patients coming on a regular basis, we have lost 15 patients whom we suspect to be victims of SUDEP in the last 16 years. These could be even more, as the relatives do not report on the deaths.

It is very difficult to get a true picture of epilepsy in this country . Hospital data on epilepsy is not prioritised but still lumped together in a column as ‘other conditions’. It is even worse for SUDEP as no information is available. Most deaths occurring in the community are not routinely certified hence the causes of death are not known. Post mortem investigations are not routinely carried out so this makes it very difficult to ascertain the relationship between the deaths and epilepsy. Most relatives of patients who have epilepsy find it very difficult to talk about it as even now epilepsy is still shrouded in stigma. It is even worse when a death has occurred. Up to now KAWE has not raised the issue of SUDEP as we are still struggling to have epilepsy recognised as a priority in the National Health Agenda.

Charles Gachenia Woiye, Medical Manager, KAWE
Anne Gathoni, Community Development Officer, KAWE

Reprinted with the permission of Epilepsy Australia-the national coalition of Australia epilepsy associations and Epilepsy Bereaved UK.