SUDEP – Sudden Unexpected Death in Epilepsy

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The Anita Kaufmann Foundation, together with the editor organizations of the online resource, ‘SUDEP Global Conversation’ (SUDEP Aware Canada, SUDEP Action UK and Epilepsy Australia), have joined forces to bring greater awareness of mortality in epilepsy around the world through Purple Day®.  Pictured above, AKFF Executive Director Debra Josephs attended the 31st International Epilepsy Congress (IEC) in Istanbul and showcased our important SUDEP materials.

Nine-year-old Cassidy Megan created the idea of Purple Day® in 2008 to bring better understanding to epilepsy and to reassure people with epilepsy, and their families, that they are not alone. Now we plan to help her to do the same for families impacted by death in epilepsy via new Purple Day® SUDEP materials, and by promoting the SUDEP Global Conversation website www.sudepglobalconversation.com as an important  resource for reliable SUDEP information.

Sudden Unexpected Death in Epilepsy (SUDEP) refers to the death of a person with epilepsy that occurs without warning, and where no other cause of death can be determined. SUDEP risk varies from person to person, but there are simple measures that can be taken to lower the risk. The first step is an honest, open discussion between a person with epilepsy and their doctor.

Cassidy Megan says, “SUDEP is still not talked about enough. By highlighting it as part of Purple Day’s global awareness effort, we hope to encourage conversation around the world. We need to learn more about it, find its cause and how to prevent it.”

According to Tamzin Jeffs, SUDEP Aware Canada’s Executive Director, “Through partnering with Purple Day and with the help of The Anita Kaufmann Foundation initiative Purple Day Every Day,  we hope to bring better awareness to SUDEP. It’s a vital risk that must be assessed with all the other epilepsy-related risks when making daily lifestyle decisions. People need to keep fully informed and aware of all the facts about their epilepsy, not just on Purple Day but Every Day.”

AKF Executive Director Debra Josephs adds, “It is important that this conversation has started in a very real way. We are so pleased to support these important efforts on behalf of all those living with epilepsy and its consequences every single day.”

For more information, visit:

SUDEP Global Conversation website http://www.sudepglobalconversation.com
Epilepsy Australia http://www.epilepsyaustralia.net/
SUDEP Action http://www.sudep.org/
SUDEP Aware http://www.sudepaware.org/

Please download your SUDEP information here:

http://purpledayeveryday.org/downloads/

Additional resources:

Danny Did Foundation: Advancing Awareness of Epilepsy & SUDEP

Centers for Disease Control and Prevention (CDC)

Chelsea Hutchison Foundation

Citizens United for Research in Epilepsy

North American SUDEP Registry

 

 

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