You've Just Been Diagnosed with Epilepsy, Now What?
An official diagnosis of epilepsy can come with mixed feelings. You may be relieved to finally have some answers and a treatment plan; you may think that it took too long to reach a conclusion; you might even have a million questions and not know where to start because no one else in your circle has ever had a seizure. Below is an outline of what to do and who to reach out to after an epilepsy diagnosis.
First and foremost, you should follow the treatment plan your neurologist gave you. Be consistent taking prescribed medications as instructed, make sure to check in with your doctors, and get tested when appropriate. There are many management tools available for free from organizations such as the Epilepsy Foundation and the Defeating Epilepsy Foundation’s PACES program. There are even seizure tracking apps available on your smartphone!
You may also want to consider creating a seizure action plan, especially if you have school-aged children. Work with your physician to make sure everything is mapped out according to your/your child’s specific needs.
Educating yourself, your family, and your community is also a very important step. Learning about epilepsy and seizures will help reduce fears and misconceptions, eventually making the world a better place for people with seizures and seizure-like disorders. One extremely important education resource is the Epilepsy Foundation’s Seizure First Aid course. Anyone can get certified for free, online in 90 minutes.
Below is a short list of nonprofits and governmental groups to help you learn:
By far the largest nonprofit in the United States dedicated to epilepsy research, education, governmental advocacy, and family resources. Each local chapter hosts an annual Walk to End Epilepsy and other community events to raise money and awareness as well as bring together local resources to assist those with seizures and epilepsy.
This national nonprofit focuses on being a center for education and support for families who have a child with a neurological condition, including epilepsy. They have a great page for epilepsy specific education with videos.
This foundation focuses on providing resources and tools for individuals living with epilepsy so that they can be more independent as well as a focus on mental and physical health.
This group focuses on joining together rare epilepsy organizations that do not have a lot of research and understanding behind them by creating a REN registry, patient-focused research, and advocacy.
The Center for Disease Control and Prevention is a U.S. government organization dedicated to tackling the biggest health problems causing death and disability for Americans. The CDC recognizes epilepsy as a legal disability regardless of seizure type and has recently committed to funding a 5-year deal to improve epilepsy systems of care.
As always, consult your physician with any specific questions you may have about your epilepsy or the research you read online, and do not self-medicate based on Google search results.
Dealing with a life-changing event can be exhausting but know that you are not alone. Get involved with your local Epilepsy Foundation chapter or find a local support group near you or online to talk with people who are going through similar situations. There are also organizations such as the Epilepsy Alliance America that can support you or a loved one by offering employment assistance, residential services, social events, and more.
Caregivers also need to make sure they take care of their mental health as well. The Caregiver Action Network provides resources and tips for family caregivers to ensure you are healthy and strong enough to support your loved one.
Should you need immediate assistance, and your physician is not available, contact the following hotlines: