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.
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.
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.
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 him or her 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.
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 voyages, skippered by a person with epilepsy, offer an example of living a fuller life. View the latest updates, photos, and videos sent in from the boat.