Zero. Nada. Zip. Usually having nothing isn’t a good thing, but in the case of people with uncontrolled seizures–like those that occur with Dravet syndrome–zero (as in no seizures) is the goal.
That’s why “Aim for Zero” is the title of this year’s National Epilepsy Foundation Epilepsy Awareness Month Campaign. “Aim for zero is not about being scared or afraid,” says Phil Gattone, Epilepsy Foundation president. “It is about strengthening your ability to manage your health.”
Throughout the month of November, the campaign hopes to raise awareness for the causes of sudden unexpected death in epilepsy (SUDEP). Every year, 1 in 150 people who have uncontrolled seizures dies from SUDEP. For children who suffer from Dravet syndrome, a rare genetic form of epilepsy, the incidence of SUDEP is even higher.
According to the Dravet Syndrome Foundation, patients with Dravet syndrome face a 15-20% mortality rate due to SUDEP, prolonged seizures, seizure-related accidents such as drowning, and infections.
The Epilepsy Foundation hopes that by getting the word out during National Epilepsy Awareness Month that people with epilepsy and their caregivers are empowered with information to understand SUDEP and they will take action to reduce risk of harm. To respond to this urgency, raise awareness, and promote steps that can help prevent SUDEP, the Epilepsy Foundation’s SUDEP Institute is issuing this Epilepsy.com Special Report and launching a dedicated #AimForZero hashtag to facilitate greater discussion of SUDEP.
#AimForZero encourages people with epilepsy to get started with reducing their risk of SUDEP with these four critical actions.
- Take medication as prescribed
- Get enough sleep
- Limit alcohol and illicit substances
- Strive to stop seizures