ETP Response to New England Journal of Medicine study on Mortailty Rate Associated with Childhood Onset Epilepsy
The article published in the December 23, 2010 New England Journal of Medicine (NEJM) by Drs. Sillanpaa and Shinnar is an important analysis and clearly demonstrates that epilepsy is not a benign condition. The authors note that seizure freedom can modify the risk of death, and they advocate for early referral to epilepsy centers and earlier epilepsy surgery in eligible patients. Epilepsy Therapy Project's mission is to stop seizures by supporting clinical translational research to accelerate getting new treatments to patients sooner to control seizures. ETP currently helps the cause to stop seizure deaths by:
- Offering a patient seizure diary – a self-management resource [developed by the Epilepsy Therapy Project and available on www.epilepsy.com] to monitor seizures and trends that can help patients, families and their physicians base decisions on real data and not free recall. Seeing trends and monitoring progress may help patients see the reality of their situation and make the appropriate therapeutic changes with their medical professionals to stop seizures. The calendar also has features to help people to remember their medications and track when they take or miss them. Our hope is that this will help people take their medications more easily and lead to better seizure control. Moreover, individuals can track other modifiable lifestyle factors that may impact their seizures.
- Funding promising new epilepsy treatments and epilepsy research in collaboration with other epilepsy-related organizations.
- Encouraging individuals with epilepsy to take this time to open a dialogue with their doctors and other health care providers to understand their own risks. It is also important to talk to others in similar situations to help them cope with difficult times. However, this dialogue should not replace taking real action with their health care team. If someone is suffering with seizures, we would like to suggest taking advantage of online resources at the American Epilepsy Society or National Association of Epilepsy Centers to help individuals find neurologists with expertise in managing epilepsy.
- Providing extensive education on epilepsy and its treatments on Epilepsy. com.
We acknowledge the information presented in the NEJM paper can be troubling to those currently suffering with epilepsy and their families, we want to assure you that the Epilepsy Therapy Project is here to help win this fight.
back to original article
Return to Articles and Publications