SUDEP – An uncomfortable but necessary discussion

SUDEP is that kind of word you don’t want to ever hear. Still, no matter how high the fear is, there should be ways to communicate about it and how the risk of it can be minimized.

“An uncomfortable but necessary discussion” – this was the title of the forum organized by Dravet Syndrome European Federation this summer around SUDEP that brought together updates on scientific data and emotional testimonies.

Hosted within the European Epilepsy Congress at Geneve that took place in July this year, the event gathered mostly physicians, but also representatives of the pharma industry and of patient organizations.

The main goal of the forum was to make everyone understand that, no matter how difficult it is to talk to patients and caregivers about SUDEP, this is a conversation that needs to take place. After witnessing the presentations and the live discussion that followed, almost 90% of the participants said the forum gave them more confidence to have this conversation with their patients.

Today, on the occasion of SUDEP Action Day, we hope to make you part of this conversation, no matter how hard it is. Today, we hope that our knowledge around Sudden Unexpected Death in Epilepsy will make us stronger. Today, we hope that more evidence will keep us and our loved ones safer tomorrow.

The recording from the forum can be watched here. Thank you to all the contributors and participants – Prof. Adam Strzelczyk, Prof. Philipp Ryvlin, Dr. Lina Nashef, Prof. Gerd Kurlemann, as well as to Saskia, bereaved mother to Noah, and especially to our partners from The Danny Did Foundation!

#sudepactionday #dravetsyndrome #strongertogether