What is Epilepsy?
Epilepsy is a chronic neurological disorder characterized by recurrent, unprovoked seizures caused by sudden, abnormal electrical activity in the brain. It is not a single disease but a spectrum, affecting 50 million people worldwide with symptoms ranging from staring spells to convulsions. 1 in 26 people will develop epilepsy in their lifetime and only two thirds are able to control their seizures through the use of medication.
Epilepsy is an umbrella term that covers many different types of seizures. Phil suffered from tonic-clonic seizures and although his seizure disorder has been controlled by medication for over 50 years, he can clearly recall that exhaustion and confusion. Read about Phil’s journey with epilepsy, here. Below are additional articles about epilepsy and seizures.
Living With Epilepsy
Living with epilepsy looks different for everyone—shaped by a wide range of challenges, experiences, and personal journeys. Click or tap “more” for stories to help you feel less alone, offer practical insights, and remind you that a supportive, understanding community stands with you every step of the way.
Read additional articles on living with epilepsy ➤
Seizure Action Plans
A seizure is a medical emergency. A Seizure Action Plan (SAP) contains tailored guidelines on how to respond during a seizure, based on the patient’s medical history. It includes health and medical information specific to the patient and helps others recognize seizures and the appropriate steps to take to keep them safe from injury or damage caused by prolonged seizures.
We are proud to be an Awareness Partner for the Seizure Action Plan Coalition to help amplify the importance of having a seizure action plan. Approximately 30% of patients diagnosed with epilepsy have refractory or treatment-resistant epilepsy which means available medications and devices are unable to bring the seizures under control. Many patients with refractory epilepsy may experience prolonged seizures (status epilepticus) and/or seizure clusters, which may need to be stopped with emergency intervention.
A Seizure Action Plan (SAP) is important because seizures can be life-threatening. Having a SAP lets others know what to do in an emergency situation. A SAP can reduce the time to action during a seizure and faster response times can reduce risk of prolonged seizures, risk of mortality, and the need for additional rescue medications.
Seizure First Aid Information & Helpful Downloads
Knowing how to help someone who is having seizure can save their life. Yet, many do not know what to do. Learn more about different types of seizures, how to best help a person before and after a seizure, and when to call for help.
Quick Links:
We’ve created a PDF describing seizure first aid in multiple languages and sizes for your convenience. Please view this list to find the language of your choice. Help us educate about seizure first aid by hanging up a poster, handing out a flyer, or sharing on social media.
Seizure First Aid Do’s and Don’ts:
- Do NOT try to hold someone down when they’re having a seizure.
- Do NOT (and I mean NEVER) try to put anything in the mouth of someone having a seizure. (Some think you should put an object like a ruler in the mouth to stop the person having a seizure from biting their tongue, but it’s more likely that you’ll get bitten or they’ll bite a piece off the object and choke on it.)
- Do move objects and/or furniture away from the person having a seizure so that they don’t injure themselves.
- Do time the seizure and call for emergency help if the seizure lasts more than 5 minutes, if there are repeated seizures, or if the person is injured or has difficulty breathing.
- Do make the individual comfortable when the seizure stops.
- Do consider turning the person on their side after the seizure during the period of recovery.
- Do expect to find that the person who has had the seizure will be confused and tired afterwards.
Alternatives to Medication for Seizure Control
One third of people with epilepsy are not able to find the right medication or the right combination of medications to control their seizures. This process of experimentation can be difficult and discouraging. Your medical team is the best option to discuss alternatives, but we offer a few science based methods that may provide some with better seizure control.
Advocacy: The Importance of Educating Others
Sharing your story is a powerful way to raise awareness about epilepsy, but people reach this point at different times in their journey with epilepsy. Even if you are not yet ready to have your name affiliated with your diagnosis, YOU can still advocate for the community. Unfortunately, epilepsy is a diagnosis many people are under-educated about, even highly recognized politicians. How can our State or Federal Representatives make political changes to help this community when under informed and often preoccupied with other issues they feel are more pressing?
This is where you come in. Whether you are diagnosed with epilepsy or a caregiver, we all have a voice. Sail for Epilepsy encourages you to utilize this voice to educate others. Whether it is a friend, a teacher, a co-worker, a State Representative, or even a US Senator we all have the power to teach others about the diagnosis, our personal experiences (if comfortable), and what one needs to live a high quality of life in today’s society.
One of Sail for Epilepsy’s Partners, The Epilepsy Foundation of New England, has set up a helpful tool you can use to advocate on a political level, as these can be some of the hardest eyes and ears to reach. Check out their Advocacy Website to connect with VoterVoice and guide you through the process of Taking Action with US Senators and Representatives. You can also find your State Representative by zip code using this Government Website. Write them a letter, an e-mail, or call their office. You can share similar information to that shown on VoterVoice or express your own story and what your state should do for you and the local epilepsy community.
Phil and his team have four main goals: Navigate, Inspire, Cure, and Educate. Please remember you are a vital part of all these steps, and that advocacy and education can give you an element of control in how people think about and experience epilepsy.
Voices for Epilepsy
One of the ways we will increase awareness of epilepsy is by sharing individual stories related to this disorder. Let’s look beyond statistics and give voice to individual messages of hope, of scientific progress and overcoming challenges.
View all Voices For Epilepsy features, here.
Join the One More Step Challenge
Are you ready to take action to live a fuller life?
The One More Step Challenge invites you to do something that improves your quality of life — big or small — with the right safety measures in place. We use sailing as an example of possibility, courage, and progress. We hope this inspires your own personal voyage.
Join us as a Virtual Shipmate and we’ll add your first name to our boat in recognition of your commitment.
Epilepsy Resources
As teens with epilepsy become adults, medical care changes. Adult epilepsy care focuses on independence, long-term planning, and adult-specific issues such as driving, work, college, pregnancy, and mental health. After being approached by families navigating this transition, we developed a checklist to start planning ahead.
Please remember that your medical team is best equipped to discuss the transition, but here are some tips that might be helpful.
There are many other resources available – click or tap “more” to view a curated list of some of our favorites.
- Epilepsy Foundation
- American Epilepsy Society
- Seizure Action Plan
- Seizure Helpline
- Forms and Resources
- Epilepsy resources for specific populations
- Find your local epilepsy foundation based on zip code or state
- Other epilepsy resources
Find a doctor
You can enter a state, or city and then you will get a list of physicians and their specialty. Alternatively, you could enter the State and/or City and then “Specialty” from a dropdown list to refine your search.
Young Adults with Epilepsy
A resource created by young adults with epilepsy FOR young adults with epilepsy
The following materials were provided by UCB.