In Gedanken bei allen Darvet-Betroffenen und Angehörigen, die leider besonders häuig im Vergleich zu Epilepsiebetroffenen, von SUDEP betroffen sind.“It is our biggest fear. It can hit us at any time. It will not just break, but burn our hearts. It will let us loose the ground under our feet. It will leave the deepest and most painful scar. It will bring us to the verge of despair. A part of us will die forever.” wrote Pilli, mother to a Dravet boy
SUDEP means Sudden Unexpected Death in Epilepsy. Until now, SUDEP remains a medical mystery, as its cause is still not clear. It is a major concern for all caregivers in the Dravet community, as well as for the specialists who take interest in this diagnosis. Today we want to highlight the importance of the 23rd October, internationally known as the SUDEP Action Day. Moreover, we want to say Thank You to the people behind this initiative for the great work they do to help raise awareness on this topic - sudepactionday.org/.
“This can happen to any of our children. It can happen to those significantly affected by Dravet Syndrome, as well as to the less affected patients. During or after a seizure, mainly at nighttime. When our children have seizures, we are always in moments of big fear. Even if we seem to be calm and handle the situation professionally, in the depth of our hearts we always know that our children have a higher risk to die. Each parent's struggle is to face this fact. SUDEP is real! Real fear is about life and death. A very powerful emotion, our instinct's expression to survive, to save and to protect life from death. As long as we know that we are capable to do our best and give our all to save our children's life, we will be strong enough to fight back the daily struggle of fear! We should have the opportunity to monitor our children during their sleep. We need it to be introduced into first aid trainings. This is the maximum that we can do to minimize the potential risk of a SUDEP!”, also said Pilli.