We all need a helping hand from time to time. And finding people who understand is so important. Epilepsy support groups may be a good option for some people with seizure disorders.
If you’re thinking of joining a support group, speak with your doctor first, so they can advise on whether they think it’s right for you.
If your physician approves of you joining a group, here are some possible ways to start finding epilepsy support groups.
Caution with epilepsy support groups
Epilepsy support groups can be very positive places. But always be cautious about any information you hear at events, and ask your doctor about any medical or lifestyle advice people at such groups might offer.
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 partners of those with epilepsy
- Support groups for specific conditions (such as Dravet syndrome, Lennox-Gastaut Syndrome or juvenile myoclonic seizures, for example)
- Support groups for people in specific towns, cities or regions
These groups may meet weekly, monthly or quarterly. The events might have a social aspect, a speaker may be invited (to talk about the 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
Although some epilepsy support groups mainly take place online, others meet in person and may have a focus on issues to do with epilepsy in a specific region or city.
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.
- 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 the Meetup website for more information.
- It is also a good idea to speak to your doctor or treatment team about groups near you – many epilepsy 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 can be a great place to talk about living with epilepsy. Use caution and always confirm any advice you read with your physician. Remember that everybody is different, and what works for some people might not for others.
Online support can be found at:
- Online forums such as Coping with Epilepsy can provide help and support
- 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.
- Epsy’s Instagram - an online community where you can ask questions and connect with others living with seizures
How other people live with epilepsy: Read Epsy’s community 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 others who can offer support and understanding.
