Information on sudden deaths from epilepsy
Preston J(1997) Information on sudden deaths from epilepsy. Epilepsia p. 72.
Abstract: Epilepsy Bereaved? is a charity representing those who have experienced the sudden death of a loved one due to epilepsy. Many individuals with epilepsy, as well as their partners, relatives, and friends, are unaware of the risk for sudden unexpected death in epilepsy (SUDEP). Much of the literature available does not include information on SUDEP. When information is given, the risk for SUDEP may be underestimated. Epilepsy Bereaved? believes that people with epilepsy and their partners, families, and friends have the same right to be informed as any others dealing with a chronic condition, unless they express a wish to the contrary. Information should include the risk for SUDEP. Bereaved families agree that they would rather have been informed of the risks than left ignorant. Increased awareness and understanding of this condition may help improve treatment compliance and enable individuals to take measures to reduce the risk for sudden death.
Keywords: SUDEP, Epilepsy, Charity, Premature death, Bereavement
Context
- Review of the work of UK charity Epilepsy Bereaved in spreading awareness of SUDEP. Surveys information on SUDEP available in materials typically provided to patients. Emphasizes that patients with epilepsy have the same right to know about possible complications of their condition as sufferers of any other chronic disease.