Connect on epilepsy.com!

Welcome! Epilepsy.com has gone through some changes this past month to make the community forums and chat room easier to find and use. Yet we're not done. We are working on more ways of connecting with resources and help. Your feedback is the driving force behind these changes as we continuously strive to improve the site.

Connecting with others is one of the most important features on epilepsy.com. We do not want to be just a source of information. We want to create an environment in which people feel empowered – to learn, to manage their epilepsy, to support and advocate for themselves and others, and to grow.

How do I Connect with others on epilepsy.com?

• Click on the Connect tab on top menu and you’ll come to the Connect landing page.
• Click on Chat Online to join our live Epi Talk Chat Room to talk about epilepsy and seizures. Or visit the Corner Booth to catch up with friends. You can also create your own public or private room!
  • Stay tuned for news about Chats on specific topics or Ask the Expert sessions!
  • If an Epilepsy Foundation affiliate wants to meet up online, contact epihelp to set up a chat room at pshafer@efa.org.

What’s new in the Community Forums and how do I find them?

The Community Forums are where people can post questions, share experiences, and give and get support and help. It’s a great place to make new friends and reconnect with others. We have recently completed some fixes to the communities which we hope make it easier to find threads and see what people are talking about! Some of these changes include:

• View the latest posts and List of Forum Topics on the Connect landing page.
• You can view all the posts by how recently they were written (viewing 10 at a time) using the latest posts feature, or go into the Forum Topic of your choice!
• Forum Topics are being reordered for easier viewing and you’ll see a few topics from the ning site!
• Instant private messaging is frequently requested. It’s available in the chat room when a tablet is used, but not on the web version yet.

How do I find specific information about a problem I am having? 

• General questions written in the comment sections of our web pages are addressed by anyone in the community. Epilepsy Foundation staff also respond and direct people to appropriate information and resources.
• Often, people need more detailed help on a specific question or issue – the Epilepsy & Seizures 24/7 Help Line is just the place!
  • Click on this link to send a request online.
  • Call our Toll-Free Helpline at 1-800-332-1000 (English) or 1-866-748-8008 (en Español).

What if I have questions about sudden unexpected death in epilepsy? Or if I’ve just lost a family member or friend to epilepsy, is there someone I can talk to?

• The Epilepsy Foundation’s SUDEP Institute is here for you. We know that many questions arise and much support is needed when you lose a loved one. Any loss is hard, but it may be different if the loss was unexpected and you don’t know why.
• You are not alone – To speak to someone about SUDEP, email sudep@efa.org and contact your local Epilepsy Foundation affiliate.

Hope to see you around the forums and chat, and stay tuned for more activities this fall!

Best wishes,

Patty Osborne Shafer RN, MN
Associate Editor/Community Manager