Helpful resources for people with epilepsy
Want to improve your health outcomes and quality of life if you have epilepsy? Getting the right treatment, creating a safe environment and having a clear seizure action plan can all help you live well while living with seizure-related disorders like epilepsy.
Something else that can help is utilizing the many resources available to you! Living with a chronic health condition like epilepsy can be challenging at times. Reaching out for help is a smart move that can allow you to take better care of yourself and your family. Here are some helpful resources and ideas that may help you and your family manage.
Ask your epilepsy provider for support
Your medical team may be able to connect you with local or national support groups (both in-person and online) for individuals facing a wide variety of illnesses, including epilepsy and seizure disorders. Support groups for individuals and even caregivers have been shown to reduce feelings of depression, isolation and loneliness for anyone affected by chronic disease.
If you have a child with epilepsy, your child's school and educational team may also be able to direct you to helpful resources and support in your community.
Check out free resources from the CDC and other organizations
The U.S. Centers for Disease Control and Prevention (CDC) supports the Epilepsy Foundation’s 24/7 Helpline, featuring trained specialists that can answer questions about epilepsy and connect you with local resources. You can access the Helpline 24 hours a day, 7 days a week, toll-free at 1-800-332-1000.
Many other organizations offer helpful information about resources that are specifically tailored for people with epilepsy and their loved ones. Try the National Association of Epilepsy Centers for some initial ideas.
Take advantage of local services
Does your epilepsy make certain activities more difficult for you to do, such as mowing the lawn, grocery shopping, getting to the pharmacy or even cleaning your home? If you have a case manager or social worker as part of your health care team, they may be able to help connect you with local services such as housekeeping, home health services, companion care, Meals on Wheels and more.
Additionally, don't hesitate to ask a trusted family member or loved one to help you arrange other services—like grocery delivery or landscaping—which can ease some of the burden for yourself or your caregiver.
Learn about clinical trials
Some people with epilepsy may be eligible to participate in clinical trials or research studies that investigate potential new treatments for epilepsy and other seizure-related disorders. There are some risks to being in a clinical trial, such as unexpected side effects or being placed in the control (placebo) group, meaning you won't receive the treatment being studied. However, clinical trials can also offer several benefits, including increased access to care and services from the research team and your doctor.
If you're interested in participating in a clinical trial, speak with your health care provider first. You can also head to ClinicalTrials.gov to learn more about the current research being done in this area.
Are you looking for epilepsy resources near you?
SIU Medicine is proud to offer accessible, innovative heath care to the diverse members of our communities! If you're looking for epilepsy resources and support, find a doctor today and learn more about what's available for you and your family.