Managing Epilepsy Well

What is the Managing Epilepsy Well (MEW) Network?

The Managing Epilepsy Well Network (MEW) is a group of programs and studies that focus on advancing the science of epilepsy self-management and improving the quality of life for people living with epilepsy and their caregivers. This network grew out of the Living Well with Epilepsy Conference in 2003. Current work is building on recommendations from the 2012 Institute of Medicine report, "Epilepsy Across the Spectrum", to increase development and dissemination of tested self-management programs for epilepsy. 

What is epilepsy self-management? Where can I learn about this?

Epilepsy self-management is both a process and a set of behaviors that help people manage their epilepsy and the impact on their daily lives. Self-management encompasses the process of and behaviors needed to manage a wide range of skills such as:

  • Managing seizures safely
  • Preventing seizure emergencies
  • Managing medications safely
  •  provide first aid, manage seizure medications safely or knowing how to respond to side effects
  • Undergoing diagnostic procedures and other treatments such as surgery or devices
  • Using dietary therapies safely
  • Modifying one's lifestyle for safety and trigger management
  • Sleep hygiene
  • Stress management
  • Knowing about and managing related conditions such as depression
  • Staying safe
  • Talking about epilepsy
  • And more!

Ideally, you are learning how to manage your epilepsy from your health care team. However, the skills and supports for self-management require more than just learning information from your doctor or reading pages on the internet. It requires learning the skills to implement the information and make it work for you. It requires resources and support. And it requires you to feel confident in your abilities to do this! 

  • Self-management education and skills can be provided by nurses and other health care providers in one on one sessions. Talk to your team about meeting with someone for this.
  • The MEW Network has developed programs that can be implemented in communities and address certain aspects of self-management.
    • Check out the programs below and see if any of these address areas of concern to you. 

What programs are in the MEW Network?

WebEASE (Web Epilepsy Awareness Support and Education) - An Internet self-management program to improve how well you stick to the treatment plan you’ve outlined with your doctor, decrease stress, and improve sleep management.

Texting 4 Control - A new system for users aged 13 and older with mobile phones that send medication reminders and motivational messages through text messages.

UPLIFT for Epilepsy (Using Practice and Learning to Increase Favorable Thoughts) - An Internet and telephone program using cognitive behavioral therapy and mindfulness to treat depression in people with epilepsy.

PEARLS (Program to Encourage Active Rewarding Lives) - A home-based depression treatment program for adults with epilepsy and depression.

FOCUS on Epilepsy – A program for adults with refractory epilepsy (epilepsy in which the medicines don’t work well, or at all, to control the seizures) that is still being tested.

Where can I get more information about the MEW Network?

For more information about programs in the MEW network, please contact Jody Kakacek at 301-918-3722 or via email at jkakacek@efa.org

The MEW is funded by the CDC and is supported by special interest project (SIP) 05-07, SIP 07-06, SIP 06-07, SIP 01-08 and SIP 09-11, and Cooperative Agreement Numbers U4 DP000043, U48DP000050, U48DP001901, U48DP001949, 1U48-DP001909. 

Texting 4 Control is made possible with funding from the Centers for Disease Control and Prevention (CDC) under cooperative agreement number 1U58DP003832-02.  Its content are solely the responsibility of the authors and do not necessarily represent the official views of the CDC.

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