Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

Topic: Advocate for Epilepsy

Created By: Patriotrehab | 06/2020 | 2 Comments

I think closing the forum is a big mistake. I don’t use social media for a number of reasons and I haven’t had good experiences with the local Epilepsy foundation being able to connect me with...

Created By: Patriotrehab | 05/2020 | 3 Comments

Please update this article https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior/mood-and-behavior-101/epilepsy-and-adhd to reflect the two updated studies that have large samples...

Created By: BBC | 05/2020 | 3 Comments

Does anyone have concerns related to mandatory facemasks some cities and towns are requiring in public spaces and stores? My small town (25K people) has required all citizens to wear face...

Created By: quida1017 | 05/2020 | 0 Comments

I took action by speaking to congress again, this time asking them to co-sponsor the safe step act for our community.

Created By: quida1017 | 05/2020 | 3 Comments

I took action and by speaking to congress and the congressman of our state of Maryland to include the disability community and the epilepsy community to the COVID19 bill and relief package because...

Created By: quida1017 | 05/2020 | 1 Comment
Created By: CJBELL | 05/2020 | 3 Comments

Hey everyone. I have written a fiction novel in which my main character lives with Epilepsy. I have researched epilepsy and spoken to a family friend (who's daughter has epilepsy), but still...

Created By: theletterwriter8 | 05/2020 | 1 Comment

Hello,
My name is Jennifer I was diagnosed with epilepsy at a young age due to trauma to the head. I am now 44 years old. A ton has happened in my life. I not only have epilepsy, I have...

Created By: birdman | 04/2020 | 1 Comment

The need for telemedicine is great now for all. It is seen as a potentially useful tool for persons with epilepsy because of our driving / transportation needs. It's even been noted that...

Created By: AB91 | 04/2020 | 2 Comments

Hi all! I recently became aware of the #SeizureChallenge on TikTok that has gone viral. It is dance videos that end in a fake seizure with water drooling out of the mouth. As an epileptic myself,...

Created By: zenmanthx | 04/2020 | 1 Comment

I request the Epilepsy Foundation to lobby for universal health care health care as a human right , which follow it's mission . Many chronic health conditions forced out of the work force...

Created By: Animcallister | 12/2019 | 0 Comments

Petition for Hollywood to Consider Making Epileptic Safe Movies Instead of Just Providing Nice Caution Signs

Okay, so if 1 in 4,000 people have photo-sensitive epilepsy, then projected Star...

Created By: Momonamission | 10/2019 | 4 Comments

The Breakdown in Patient/Doctor communication in Psychogenic Non-Epileptic Seizures (PNES)/Convulsive Syndrome of Unknown Origin (CSUO) as seen by a Mother:

In 2018 the National Alliance on...

Created By: Meli7461 | 09/2019 | 3 Comments

11 weeks ago, my world was changed forever, and my faith shaken to its core.i received a frantic call from my husband Thursday, July 18,2019 to come home immediately that Our son,Joshua, who had...

Created By: ericajaneli | 04/2019 | 1 Comment

I live in the Capital of Florida and we have close to nothing. It's a joke. There is an organization called the Epilepsy Association of the Big Bend and while I admire what work they're...

Created By: carriemceachin | 11/2018 | 1 Comment

Topic:
Diagnostic Dilemmas and Testing
Hey everyone. I could really use some advice on what to do for my two-year-old son. It’s a long story, so here we go: a couple months ago my son...

Created By: Don’t settle do research. | 08/2018 | 2 Comments

Calling out all doctors. Why myself and countless families are suffering due to your lack of caring I suppose I don’t know. What I’m getting at is when I sat down with a neurologist the first time...

Created By: christinefrog | 07/2018 | 0 Comments

Hi everyone.
This is one of the poems from my collection of poems about my daughter who died at the age of 25 from SUDEP. She was 7 months pregnant so we lost them both.

Another...

Created By: christinefrog | 07/2018 | 1 Comment

I’ve finally published my collection of poems that have taken me 13 years to write about the loss of my daughter Sam and her baby. It’s my journey from the day before she died until now. Hopefully...

Created By: Shelly_58d83c9deecce | 04/2018 | 0 Comments

I have stress seizures & all volunteer coordinators think & say I can't be a volunteer because I'm unsafe to volunteer because I have epilepsy read my Facebook note...

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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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