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More than 3.4 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.

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.

"Join us and start a conversation about epilepsy and seizures!"

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 you are not ashamed, 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!

Authored By:

Judy Gretsch

on Monday, April 22, 2019

Resources

Epilepsy Centers

Epilepsy centers provide you with a team of specialists to help you diagnose your epilepsy and explore treatment options.

Epilepsy Medication

Find in-depth information on anti-seizure medications so you know what to ask your doctor.

Epilepsy and Seizures 24/7 Helpline

Call our Epilepsy and Seizures 24/7 Helpline and talk with an epilepsy information specialist or submit a question online.

Tools & Forms

Download our seizure tracking app, print out seizure action plans, or explore other educational materials.

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