Resources and Other Stuff

It is important to know that there are resources for people living with epilepsy for a variety of situations—medical, personal, or otherwise—that may occur while living with epilepsy. In light of that reality, this page is dedicated to resources and other epilepsy-related items that may help you in some way. Whether or not you have epilepsy, the resources and information below can help guide you in the direction that’s best for you.

This is a page that will be updated constantly and will hopefully grow based on your suggestions! Feel free to comment on any of the pages or contact A.J. with things to add to this page.

Resources:

The Epilepsy Foundation, link here. 

  • The Epilepsy Foundation is the largest non-profit organization in the United States devoted to raising awareness about epilepsy. The Epilepsy Foundation hosts many charity events to raise funds for epilepsy research and services. There are also several Epilepsy Foundation chapters based on location, which you can find from this database here.

The National Institute of Neurological Disorders (NINDS) and Strokes, link here.

  • NINDS is an organization devoted to research and raising awareness about a variety of neurological disorders, and they have resources devoted to epilepsy-related medical care and research, which you can find here. 

American Epilepsy Society, link here.

  • A research institution mostly for the purposes of epileptologists (fancy word for a neurologist who specializes in epilepsy) as well as other relevant medical professionals. They publish research related to epilepsy and current news about epilepsy research.

Epilepsy Society, link here.

  • Based in the United Kingdom, this organization is devoted to non-profit work that raises awareness about epilepsy and also raises funds for epilepsy research, education, and medical care.

 

Other Stuff:

Lifestyle and living blogs:

Living Well With Epilepsy, link here.

  •  This is an epilepsy blogging website with content supported by primary staff writers and several guest contributors. It raises awareness about epilepsy through charity events but also uses the stories submitted by people with epilepsy to discuss healthy living, relationships, and the daily issues that can come up while living with epilepsy. You can find more information about how to contribute your story here.

 

Platforms and storytelling blogs:

My Epilepsy Story, link here.

  • This is a site dedicated to women and girls with epilepsy who need a platform to be heard. Epilepsy is often under-discussed in terms of research, but the issues women with epilepsy face are especially neglected. My Epilepsy Story serves as a platform run entirely by contributor stories about what it’s like to live with epilepsy. More information on how to contribute can be found here.

Social Media Platforms

  • Places like Facebook have several closed groups for people with epilepsy. They are support groups run by the community, and both people with epilepsy and loved ones who have someone in their lives with epilepsy are welcome to join these groups when appropriate. They are a great way to build a community with other people who have epilepsy. There are many of them, so it’s generally up to you to find something that works!

 

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