1% of the population suffers from epilepsy and fully one third of patients with epilepsy who take available treatment do not have their seizures fully controlled.

Epilepsy is an umbrella term that covers many different types of seizures. The most obvious type of seizure, which is therefore most commonly thought of when someone hears the word epilepsy, is the tonic-clonic seizure (formerly known as a grand mal seizure). During one of these seizures a patient loses consciousness, muscles stiffen and there are jerking movements. Tonic-clonic seizures last for 1-3 minutes, and after regaining consciousness a patient feels exhausted, confused and has memory loss for the seizure. This is the usual form of epilepsy that Phil suffer from, and although his seizure disorder has been controlled by medication for 40 years, he can clearly recall that exhaustion and confusion. Read about Phil’s journey with epilepsy, here.

Provided by UCB

Other types of seizures can be less obvious. Some patients experience an absence seizure (formerly known as a petit mal seizure), which is generally characterized by a lack of awareness, staring into space and an absence that occurs for only a few seconds. Absence seizures are quick in onset and offset. Phil suffered only one of these seizures.

Seizures can result from known causes but also from unknown (also called “idiopathic”) causes; in fact, one of Phil’s family members suffered a single very long seizure when they were three years old, and to this day physicians don’t know why it happened. In some cases there are genetic causes in which a mutation in a gene leads to increased excitability of neurons in the brain. Other seizure disorders, like Phil’s, can result from a head injury and are termed post-traumatic epilepsy. Unfortunately, many of our troops are returning from the battlefields with this type of epilepsy. And up to 40% of patients with autism can suffer from epilepsy as a co-morbidity. Read more about types of seizures and some of their causes, here.

What is it like to have a seizure?

Learn more about what can happen during a seizure, here.

Phil describes what it is like for him to have a seizure.
Seizure first-aid

Do you know what to do if you encounter someone who is having a seizure? For most people, the answer is “No”. So here’s a simple list of do’s and don’ts.

  1. When someone is having a tonic-clonic seizure there is little you can or should do.
  2. Don’t try to hold someone down when they’re having a seizure.
  3. Don’t (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.)
  4. Do move objects and/or furniture away from the person having a seizure so that they don’t injure themselves.
  5. Do make the individual comfortable when the seizure stops.
  6. Do consider turning the person on their side after the seizure during the period of recovery.
  7. Do expect to find that the person who has had the seizure will be confused and tired afterwards.

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.

Rosalind Picard
M.I.T. and Empatica
Richie Shane, New York City
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.

The One More Step Challenge: Are you able to take one extra step to do something you haven’t done before, with the necessary safety measures in place?

Celebrate our global community of Virtual Shipmates who joined the One More Step Challenges on a personal voyage towards living a fuller life.

The Sail For Epilepsy voyage, skippered by a person with epilepsy, will cross the world’s oceans. View the latest updates, photos, and videos sent in from the boat.

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