Community Forum

Seizure Action Plans and Sharing Info!

Hi everyone,

Have you visited the My Epilepsy Diary today? If you don't have one, now is the time to start one. We've added two new features that should make it easier to manage your seizures.

1- Create a Seizure Plan, also known as an action or preparedness plan - we've hadpdf forms of these plans in our seizure preparedness section.

Now you can create one right in your epilepsy diary. The diary will fill in your types of seizures and medicines from the data you've already entered, then you fill in the rest! You can save it and print it out any time you want. If your treatment plans have changed, you can edit and update it anytime you want. Then print it out and use it to make sure others know what to do when you have a seizure. It will have descriptions of your seizures, what treatments you use regularly, and what to do in case you have a seizure. This part includes basic seizure first aid as well as personalized information about what to do - for example when and how you use medications or a VNS magnet when you have a seizure. It's so important for people around you to know what to do, but it's also hard to know who to tell and how to do it. The My Seizure Plan makes it easier to share this info. It will be with you whenever you need it and you can share it with whoever you want!

Parents will find it helpful to keep copies for babysitters, coaches, camp counselors, school nurses, or whoever plays an important role in your child's life.

To make a Seizure Plan, visit My Epilespy Diary and you'll find it under Reports. If you'd like help creating your plan, or need help starting a diary, email me at

2- Want to share your diary with a family member or caregiver? If you're a parent or spouse of a person with epilepsy, would it help for you or another person to enter or view information in your loved one's diary? Many people don't know what happens in their seizures and rely on observations from others. Or they may have other problems too and need other people's help to manage their health. In these situations, family members or other caregivers are crucial members of the care team! Their observations and input can now be easily entered into My Epilepsy Diary, as long as the person who created the diary gives their permission. If you don't want others adding data, but would like them to be able to see it, then you can give someone the ability to view but not write in your diary!

To grant permission and share your diary, visit My Epilepsy Diary and click on My Shares. To give someone permission to edit or view your diary, they first must be a registered user of and of the diary. Once you write in their name on your diary, we'll verify that they are a user, and grant them the permissions you want. It's your decision, not ours or theirs.

3- Coming soon - Sharing with your doctors or nurses! If you'd like to make it easier to talk with your health care team, soon you'll be able to grant permission to your doctor or nurse to view your diary. I'll keep you posted when this is up and running. Meanwhile, try the My Shares and let us know what you think!

If you want help with any of these new features, please contact me!

Have a great day!



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The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

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