Why it’s important to talk about it!
Three million people in the U.S. and 65 million around the world have epilepsy. It is more common that Parkinson’s disease, multiple sclerosis, autism, and cerebral palsy combined!
A third of the people with epilepsy live with uncontrolled seizures because no available treatment works for them. Many more live with serious side effects from their medication as the price of seizure control.
Fear and misunderstanding still surround this chronic neurological condition making many people reluctant to talk about it. That reluctance leads to lives lived in the shadows, discrimination in workplaces and communities, and a lack of funding for new therapies research.
The Epilepsy Foundation wants to help everyone with seizures live to their fullest potential. We want to stop discrimination, find a cure, and bring hope and help to the families affected by epilepsy.
Epilepsy Conversation Starters
Whether you have epilepsy or know someone who does, you can be part of ending the fear and misunderstanding that surrounds seizures by talking about it.
If you have epilepsy, you might want to hide it but that can be dangerous. If you have a seizure, you want the people close to you prepared so they know what to do. Find seizure first aid information here.
Try to stay very matter-of-fact and positive. Epilepsy is only part of who you are. Seizures are not anything to be ashamed of and if you act like it, people around you will take it in stride too.
Here are some opening lines you might find helpful:
- You know how I'm always wearing this bracelet? It's a medical alert bracelet because I have epilepsy.
- Remember that movie we watched? I have seizures too, but mine are a little different.
- Did I ever tell you why I take medicine every day? I have epilepsy and I take medicine so I don't have seizures.
- Remember yesterday, when I was acting strange? That was actually a seizure.
- You know, sometimes I might act a little weird. I have epilepsy and every once in a while, I have seizures. They can seem scary, but they are over quickly and they're not contagious.
When you tell people you have epilepsy, you may face a lot of questions. Depending on culture and age, some people you tell might have very different perceptions about epilepsy. People may want to know if your seizures hurt or what they feel like. They may also worry that epilepsy is contagious so try to reassure them it is not. You may find it helpful to print some information from our website or have some Epilepsy Foundation brochures or handouts to give the person.
It may take people some time to process what you’ve told them. Try to be patient and check back later to see if they have questions. You might be surprised and learn they already know about epilepsy!
If you want to spread awareness about epilepsy and seizures, try one of these ideas:
- Start a conversation with one of these opening lines:
- You know why I wear purple? It's the color for epilepsy and I want to spread awareness about this neurological disorder that effects 65 million people around the world.
- Remember that movie we watched? It only showed one kind of seizure. Did you know there are more than 20 types of seizures?
- Many people don’t know the right way to help someone having a seizure and that concerns me. Do you know? Can we talk about it so you’ll be prepared in case someone has one around you?
- The Epilepsy Foundation leads the fight to stop seizures, find cures, and save lives. They bring hope and support to the 3 million people in the U.S. who have seizures and they need our help. Will you join me at an event to raise awareness or make a donation to support the Foundation’s mission?
- Share content from epilepsy.com on your social media accounts.
- Participate in the National Walk for Epilepsy.
- Participate in National Epilepsy Awareness Month activities each November.
- Find other ways to get involved with the Epilepsy Foundation or with a local Foundation near you.