17 Great Epilepsy Facebook Groups You Should Join

06 March 2019, SeizureLink Staff
When people are united by a condition like epilepsy, the sense of community becomes all the more important as they reach out to each offering support and hope.

Facebook groups are a great way for people with similar interest to come together. When those people are united by a condition like epilepsy, the sense of community becomes all the more important as they reach out to each offering support and hope.

This is a list of some of the best active Facebook groups for epilepsy. 

Facebook groups have three privacy settings: Public, closed, and secret. Public groups can be seen by anyone and anyone can see posts, even if they don’t have a Facebook account. Closed groups are a little more private; their posts are only visible to current group members. You can read more about group privacy setting on Facebook’s Help Page.

General Epilepsy Support

 

1. National Epilepsy Association of America

 

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Public Group. Unclassified.

While there does not appear to be an actual “National Epilepsy Association of America” this little group is still a source of comfort, support, and education for people who have seizures and their friends and family. Members can discuss the mental and physical difficulties that come with epilepsy.

The group was formed around 2015 and currently has more than 1,400 members. It is fairly active but still small enough to be somewhat intimate. There is only one admin for the entire group, but it doesn’t seem that they really need more. The conversations are very respectful and supportive.

Click here to join the National Epilepsy Association of America Facebook Group

 

2. All About Life With Epilepsy

 

All About Life With Epilepsy Facebook Group

Closed Group. Unclassified.

This group was formed around 2016, but it already has more than 17,000 members and a host of admins and moderators. The description gets right to the point, stating that it is a help-based group for support and discussion.

Membership is comprised of both people who have epilepsy and friends and family members of someone with epilepsy. Members are also welcome to add members who may be interested in joining. There is also a section of related groups that are recommended by admins for depression, anxiety, and other issues.

Click here to join the All About Life With Epilepsy Facebook Group

 

3. Epilepsy Encouragement – You Never Walk Alone

 

Epilepsy encouragement - you never walk alone

Closed Group. Support.

This is a quieter group than some of the others on this list, but could still be a good source of information. It has more than 3,000 members and was created around 2011. The five admins work to ensure a positive group experience, but currently this is more of an educational group than it is a community with much interaction.

There are likely good things you can gain from it though as far as understanding your epilepsy better and learning about new technologies and scientific breakthroughs.

Click here to join the Epilepsy Encouragement Facebook Group

 

4. Epilepsy

 

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Closed Group. Unclassified.

This is one of the oldest groups on our list, created around 2007. It has more than 13,000 members, but there can be a day or so between posts so you aren’t likely to get a lot of notifications.

Previous discussions could be beneficial, but joining in current discussions can be good too. The single admin and six moderators keep it all civil and organized. This is a good place to get support and encourage others.

Click here to join the Epilepsy Facebook Group

 

5. Epilepsy Seizure Support Group

 

epilepsy seizure support group

Closed Group. Support.

With more than 7,800 members this lively little group gives people with epilepsy a place to get support and to get it. Created around 2014, the Epilepsy Seizure Support Group has seven admins. Members help each other through the rough days and celebrate the good ones.

There are some rules that all members must follow, but they are pretty standard, such as no bullying, no profanity, no selling and no giving medical advice. However, sharing your own experiences is fine. Flashing gifs or videos are not allowed under any circumstances since that can be a trigger for people who have photosensitive epilepsy.

Click here to join the Epilepsy Seizure Support Group

 

6. Living with Epilepsy & Seizure Disorders Support/Discussion Group

 

epilepsy awareness FB group

Closed Group. Support

This group, created around 2014, boasts more than 5,000 members and is fairly active but not so much that you can get lost. Their one rule is “Let’s not be cruel to one another” and it sums up the atmosphere of the gathering. There are only two admins, but they promote a supportive, safe, judgement-free space.

They are understanding and encourage posting about the bad days as well as the good. The group focuses on real life and real life with epilepsy. There are a few rules, but they are mainly to keep order, such as no bullying and to respect others’ privacy. This is very reasonable and essential for creating the safe place that is the core of this group.

Click here to join the Living with Epilepsy & Seizure Disorders Support/ Discussion Group

 

7. Temporal Lobe Epilepsy

 

epilepsy strong

Temporal lobe epilepsy has its own set of challenges and this group allows people with the disorder to come together and discuss their struggles. Created around 2011, there are more than 7,700 very active members.

The four admins and two moderators keep order and the conversations center around living with temporal lobe epilepsy. The primary focus of the group, though is to assure members that they are not alone in their epilepsy journey.

Click here to join the temporal lobe epilepsy Facebook Group

 

8. Epilepsy - The Ketogenic Way

 

epilepsy ketogenic way FB group

Closed Group. Support.

This little group boasts more than 3,700 members and was created around 2013. It is fairly active and has an impressive army of admins which should ensure that it is well monitored and any trolls that may get past the gate will be shown the door straight away.

It centers around the ketogenic diet as a way to help manage epilepsy. It is also a support system for people with epilepsy and parents of children with epilepsy. They share recipes and have a number of informative documents in their file section.

Click here to join the Epilepsy - The Ketogenic Way 

 

9. Epilepsy/Seizure Support and Discussion


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Closed Group. Custom.

Privacy, discretion, and respect are the cornerstones for this group. In fact, they lead with this emphasis in the group description. With more than 37,000 members and 9 admins, this group is extremely active.

It was created around 2011 and is a place for members to freely share their  frustrations, fears, struggles, and celebrations. It is a place of support where you can vent when having a bad day or offer words of encouragement to someone who is struggling. If you are looking for a safe place to connect with others who have epilepsy, this may be the place for you.

Click here to join the Epilepsy/ Seizure Support and Discussion

 

10. Epilepsy Seizure Awareness Support Group

 

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This is one of the larger epilepsy groups with more than 10,000 members. It was created in late 2017 and has two admins who monitor group activity. It is for individuals who have epilepsy and their friends and family.

It is centered on epilepsy, but is very friendly and welcoming. Disrespect is not tolerated and members are not allowed to be hurtful or put anyone down. Admin is accessible if there is a problem which is a considerable concern in Facebook groups. In all, it is a positive, supportive, nurturing environment.

Click here to join the Epilepsy Seizure Awareness Support Group

 

11. Epilepsy Support Group

 

fb7

Closed Group. Support.

Created around 2013, this group has more than 8,000 members with four admins. It is fairly active and is a safe place to get support if epilepsy has touched your life. There are some restrictions. Members are not allowed, under any circumstances to give any advice on medication – although they can relay their personal experiences.

They cannot give any medical advice, but can discuss their personal medical journey. It is a place for people to come together, share experiences, and support each other as they all go through the challenges of epilepsy together.

Click here to join the Epilepsy Support Group

 

Women with Epilepsy

Sometimes a woman just needs to talk to another woman, because there are some things only a woman can understand. These epilepsy Facebook groups are strictly women only and offer a safe place for ladies to get and give support.

 

13. Women Living with Epilepsy/Seizure Disorder

 

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Closed Group. Support.

This is a women-only group for women who have epilepsy or moms with daughters. The group was created around 2016 and has more than 1,500 members. The one admin and two moderators work to keep everything running smoothly and ensure that everyone is kind to each other.

There are three questions that must be answered when you request to join. If you do not answer the questions, you are not allowed to join the group. It is a safe group for women to vent, chat, share experiences, get help, and find information.

Click here to join the Women living with epilepsy/ seizure disorder group

 

14. Women with Epilepsy

 

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This women-only epilepsy group has more than 3,900 members and was created around 2011. It is fairly active with two admins and two moderators who keep everything in order. 

The group is designed to be a safe space for women to support women and they can share questions, thoughts, encouragement, and inspiration as they navigate a life with epilepsy.

Click here to join the women with epilepsy group

 

For Parents of Children with Seizures

Parenting is hard, but when your child has epilepsy, it can be even more difficult. These groups are created specifically for the parents, where they can ask questions, get information, and find comfort.

 

16. Epilepsy Angels – Parents of Children with Seizures

 

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Closed Group. Support.

This group is aimed at parents of children with seizures, but in their description they also open their doors to anyone who knows someone suffering from epilepsy and has questions. It is a good arena for people to discuss what it is like to care for someone who has epilepsy.

They can trade information and tips for care giving and self care. The group was created around 2012 and has more than 1,800 members. The activity tends to be a little sporadic, but there is good support and information sharing. If you are looking for a more low-key group that won’t blow up your notifications, this might be a good one for you.

Click here to join the Epilepsy Angels - Parents of Children with Seizures

 

17. Epilepsy in Babies, Toddlers, and Children Support Group

 

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This group was originally started around 2011 by Small Steps – Seize the Day, a charity that focuses on epilepsy in babies and children. Now it is run by seven admin volunteers, each who has a child with epilepsy.

The majority of the group’s more than 3,800 members also have children or grandchildren with epilepsy. They offer a nurturing, safe, confidential space to share experiences, ask questions, and learn from each other.

Click here to join the Epilepsy in babies, toddlers, and children support group

 

There are thousands of groups on Facebook for nearly every conceivable topic. You can always search for more targeted topics or specific types of epilepsy, but these groups are a good place to start. They are established and well monitored to help you have a positive experience. Get support and connect with others who are experiencing the same things you are. It helps you to feel not quite so alone. Know of other great groups? Let us know in the comments below.

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