Very little attention is given to SUDEP in India. SUDEP is a relatively new topic of discussion and, more importantly, a rare condition (according to community studies).

The Indian Epilepsy Association is basically concerned with social aspects of epilepsy, emphasising the regularity of medication, and clearing the misconceptions, myths, fears, and stigma attached to epilepsy. When this is the prime concern the rare occurrence of SUDEP is kept in the background. The people with well controlled epilepsy and their relatives are more worried and distressed because of the societal attitudes. Hence our aim is on making life more comfortable by talking about the positive aspects. Sometimes SUDEP may be mentioned just to emphasise that such a thing can happen in uncontrolled epilepsy with irregular medication.

Epileptologists, neurologists, and occasionally paediatricians or others do discuss SUDEP during scientific meetings. Sometimes patients or the carers raise this issue, particularly the internet savvy group who access the information.

It is important to know the prevalence and incidence of SUDEP. It should be pursued and discussed by the medical fraternity. However when it comes to discussion with people who have epilepsy and their carers, I feel that we have to weigh the pros and cons, as the discussion of such an entity may affect quality of life in some people. Perhaps this need not be raised in people with well controlled seizures. However, in patients with poorly controlled seizures, irregular medication, or polytherapy – this entity should be discussed emphasising that poor seizure control is a contributory factor for SUDEP.

H.V. Srinvias,
Consultant Neurologist Sagar Apollo Hospital,
Bangalore,India
Secretary General, Indian Epilepsy Association

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