Epilepsy Bereaved?, Wheatfield, Stoke Talmage, Oxfordshire, England.
Epilepsia. 1997 Nov;38(11 Suppl):S72-4. doi: 10.1111/j.1528-1157.1997.tb06135.x.
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.
癫痫丧亲者组织？是一家代表那些因癫痫而突然失去亲人的慈善机构。许多癫痫患者以及他们的伴侣、亲属和朋友都不知道癫痫猝死 (SUDEP) 的风险。许多现有的文献都没有包括关于 SUDEP 的信息。当提供信息时，SUDEP 的风险可能被低估。癫痫丧亲者组织认为，癫痫患者及其伴侣、家人和朋友与任何其他患有慢性疾病的人一样，有权获得信息，除非他们表示相反的意愿。信息应包括 SUDEP 的风险。失去亲人的家庭同意，他们宁愿被告知风险，也不愿一无所知。提高对这种情况的认识和理解可能有助于改善治疗依从性，并使个人能够采取措施降低猝死的风险。
