Discussing mortality in epilepsy can be a major source of discomfort for people living with epilepsy, their families, and caregivers. Consequently, providers sometimes avoid discussing the subject, and those with epilepsy and their loved ones are not given valuable information to help them make informed choices about care, wellness, and lifestyle. Additionally, epilepsy-related deaths are often not accounted for properly, making it difficult to establish accurate statistics around mortality in epilepsy. But we do have some data on the subject, and by educating physicians, patients, and families on the risks we can in turn help them reduce those risks, and allow for more open conversation, increased knowledge, further research, and better solutions for reducing the risk of epilepsy-related deaths. This is why PAME, or Partners Against Mortality in Epilepsy, was created.
Today on Seizing Life we welcome Gardiner Lapham back to the podcast. Gardiner is one of the co-founders of PAME, a collaboration of health care providers, researchers, scientists, public health officials, patient advocates, caregivers, bereaved families, and people living with epilepsy with the goal of improving our understanding of and working to prevent epilepsy-related mortality. Gardiner discusses the creation of PAME, its initiatives, and aims, and provides us with data and insights around epilepsy-related mortalities resulting from SUDEP (Sudden Unexpected Death in Epilepsy), suicide, accidents, and status epilepticus. It’s a difficult, but necessary conversation that needs to continue both within and outside the epilepsy community in order to better understand and, most importantly, reduce the risk of epilepsy-related deaths.
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