Epilepsy Bereaved?, Bournemouth, England.
Epilepsia. 1997 Nov;38(11 Suppl):S3-5. doi: 10.1111/j.1528-1157.1997.tb06121.x.
Epilepsy Bereaved? is a charity that aims to inform, support, and empower partners, relatives, and friends of people affected by sudden unexpected death in epilepsy (SUDEP). It also works toward preventing mortality due to SUDEP through raising awareness and promoting research. The aim of Epilepsy Bereaved? is to enable bereaved families to be heard. The charity represents more than 200 families in the United Kingdom and overseas. This article presents some of their experiences. All the deaths involved young people, many of whom had been recently diagnosed with epilepsy or had experienced only infrequent seizures. Their families report that they have been unaware of the risk for sudden death. Explanations and counseling from health professionals were rare. This was often felt by families of the victims to be symptomatic of a continuing failure to provide adequate information and support to people with epilepsy. In many cases, distress was exacerbated by the belief that death certificates were inaccurate. In supporting this workshop, Epilepsy Bereaved? hopes that further progress will be made to prevent deaths and suffering from this tragic syndrome.
癫痫丧亲者组织是一家慈善机构，旨在为受突发性不明原因癫痫猝死 (SUDEP) 影响的患者的伴侣、亲属和朋友提供信息、支持和赋权。该组织还通过提高认识和促进研究来预防因 SUDEP 导致的死亡率。癫痫丧亲者组织的目的是让丧亲家庭的声音被听到。该慈善组织代表了英国和海外的 200 多个家庭。本文介绍了他们的一些经历。所有涉及的死亡都是年轻人，其中许多人最近被诊断出患有癫痫，或者只经历过偶尔的癫痫发作。他们的家人报告说，他们不知道突然死亡的风险。来自卫生专业人员的解释和咨询很少。受害者家属常常感到这是继续未能向癫痫患者提供足够信息和支持的症状。在许多情况下，对死亡证明不准确的信念加剧了痛苦。通过支持这个研讨会，癫痫丧亲者组织希望在预防这种悲剧综合征导致的死亡和痛苦方面取得进一步进展。
