How to Find Epilepsy Support Groups

  • May 14, 2020
  • 3
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We all need a helping hand from time to time. And finding people who understand is so important. Epilepsy support groups can be a great way to make friends, participate in the community and raise further awareness of the condition. You can also use these groups to learn about local issues or get tips and advice on how to live with your condition (although you should only get medical advice from a trained epileptologist or health professionals). 

The good news is that there’s a huge network of support out there where you can get tips, advice and ideas. Let’s look at how you can start finding epilepsy support groups today!

Which kind of group do you want support from?

There are many different kinds of epilepsy support groups available. Your options include:

  • Epilepsy support groups for adults
  • Epilepsy support groups for children 
  • Epilepsy support groups for parents of children with seizures
  • Support groups for specific conditions (such as Dravet syndrome, Lennox-Gastaut Syndrome or juvenile myoclonic seizures)

These groups may meet weekly, monthly or quarterly. The events might have a social aspect, a speaker may be organized (talking about latest research, for instance) or there might be an opportunity to do fundraising. Once you start attending, you might even want to suggest ideas for upcoming events yourself.

Talking epilepsy: 5 tips for telling people about your seizures 

Epilepsy support groups near you

While it’s not possible to meet in person during the coronavirus pandemic, it’s often beneficial to meet with people who live near you. They can tell you about specialists in your city and will be able to offer advice about local services. They will also understand challenges that are specific to your town or state (such as local driving laws). 

Right now, all of these support groups will be happening online (via video calling apps) but in future, you will be able to meet up in person. 

Here’s how to find epilepsy support groups near where you live:

  • Epilepsy Foundation support groups are available in most states, and many put on social events. Click here for more information.
  • The Epilepsy Alliance of America provides in-person support groups, counseling, camps and much more. Click here for more information.
  • There are also many Meetup groups for people with epilepsy – and these are often available in smaller towns too. To find groups near you, visit here for more information.
  • It is also a good idea to speak to your doctor or treatment team about groups near you – many centers can connect you with relevant networks.

Epilepsy Support Groups online

While you should always speak to your treatment team when it comes to medical advice, online forums are a great place for discussing concerns and tips for living with epilepsy. Online support can be found at:

  • Facebook groups. These are run by private individuals and charities where you can discuss issues and meet others. They might be specific to your form of epilepsy or where you live. Search for ‘epilepsy’ and ‘seizures’ on Facebook.  Use caution and always confirm advice with your physician.
  • Epsy’s Instagram - an online community where you can ask questions and meet others living with seizures

How others live with epilepsy: Read Epsy’s user stories

You’re not alone

Having epilepsy can sometimes feel isolating and there is still a lot of misunderstanding around the condition, this is why epilepsy support groups can be so helpful. By meeting other people who are living with epilepsy, you can connect with them, ask and answer questions and keep on learning. 

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