How to Find an Epilepsy Support Group
LordHenriVoton / Getty Images
Medically reviewed by Brigid Dwyer, MD
Joining a support group can help a person with epilepsy meet others who understand their experiences, provide a place to share resources, and foster a sense of community.
Epilepsy, sometimes called a seizure disorder, is a condition in which a person has two or more unprovoked seizures. A seizure occurs when there is a brief change in electrical activity in the brain.
Seizures can present in different ways depending on the type of seizure. Some seizures are barely noticeable while others are severe. A person having a seizure may stare, fall, shake, have jerking motions, lose awareness, or have other symptoms. Seizures are often controlled with medication.
There are several types of epilepsy with many different causes. All types can impact a person's life in significant ways, making support essential for coping.
This article will discuss what epilepsy support groups can offer and how to find them.
LordHenriVoton / Getty Images
Types of Epilepsy Support Groups
Epilepsy support groups can be categorized according to the means by which they function, including:
In person
Online, such as social media or forums
By phone
Epilepsy support groups can cater to certain people affected by epilepsy, such as:
Adults with epilepsy
Teens with epilepsy
People of certain genders with epilepsy
Parents and caregivers of a loved one with epilepsy
Families with a member who has epilepsy
Support groups can sometimes center around a specific activity, such as art therapy.
Benefits of Joining a Support Group
Because epilepsy can cause fear and stigma, it can be an isolating illness. Support groups can make a person with epilepsy feel less alone, but they are also valuable resources in other ways.
Epilepsy support groups can help participants by:
Sharing experiences
Sharing information and resources
Promoting advocacy
Giving and receiving emotional and practical support
Providing a space in which to feel safe
Accessing experts, such as guest speakers
Providing a sense of community
Being a safe place to ask questions
Offering support when adjusting to a new diagnosis
Supporting for families and loved ones of people with epilepsy
Finding an Epilepsy Support Group
Epilepsy support groups can be local or far-reaching. Where to find one depends on the type of support you are looking for.
In Person
The Epilepsy Foundation is an international organization that branches off into local chapters. Contacting the chapter in your area is the best way to access in-person support that is close to home.
The Epilepsy Foundation offers a search tool to help you locate your nearest branch. Each chapter has unique programs, group sessions, and resources. For example, the Epilepsy Foundation of Northeastern New York provides art therapy, a women's group, and a men's group.
On its website, the foundation lists groups throughout the United States, such as the ones in Northern California and Greater Chicago.
You can also look for local epilepsy groups that may or may not be affiliated with larger organizations, like Empowering Epilepsy in Cleveland, Ohio.
Online
As with in-person groups, the Epilepsy Foundation's local chapters usually provide online support group options. Some of these are active through social media channels, like the private support group for parents made available on Facebook by the Epilepsy Foundation of Northeastern New York.
Check your local Epilepsy Foundation chapter for online groups, such as the one affiliated with Epilepsy Foundation New England, which lists available virtual groups.
Many local support groups switched from in-person to virtual meetings in response to the COVID-19 pandemic, such as ones offered by the Florida organization JoshProvides.
You can also check in with epilepsy centers outside your region. For example, Penn Epilepsy Center offers a virtual support group that does not require you to be enrolled locally to participate.
The Epilepsy Foundation has a 24/7 helpline that is supported by the Centers for Disease Control and Prevention (CDC). The helpline, which is staffed by trained information specialists, is available around the clock. Personnel can help answer questions and provide resources to people living with epilepsy; their caregivers, friends and family; or anyone with a question or concern.
This service is provided in English and Spanish.
Call the toll-free helpline at 800-332-1000 (en Español 866-748-8008).
You can also visit the Epilepsy Foundation’s 24/7 Helpline page.
How to Find Other Resources and Support for Epilepsy
Many resources in addition to support groups are available for people with epilepsy and their loved ones.
Mental Health Tools
Some people with epilepsy experience mental health difficulties. The CDC recommends the following resources for support and information on mental health with epilepsy:
You can also ask a healthcare provider for a referral to a mental health professional.
Seek immediate help if you are in a mental health crisis by calling 911 (or your local emergency number) or contacting:
988 Suicide & Crisis Lifeline (previously called the National Suicide Prevention Lifeline): Dial 988 for English or Spanish, or text 988 to reach the Lifeline Chat. Teletypewriter (TTY) users can use their preferred relay service or dial 711 then 988.
Crisis Text Line: Text SIGNS to 741741 for around-the-clock, free, anonymous crisis counseling
Disaster Distress Helpline: Call or text 800-985-5990 (press 2 for Spanish)
Financial Support
Many drug companies offer patient-assistance programs if you can't afford your medication (or your child's) or need other accommodations. These programs may arrange for:
Free or low-cost prescription medication
Medication delivered to your home, healthcare provider's office, or pharmacy
Refills valid for up to a year before reapplying
Eligibility requirements vary by drug company, but common criteria include:
Being a U.S. citizen or resident
Not having prescription drug insurance that covers your medication
Meeting certain income limits, as set by the drug company
To access these programs, you must apply by filling out a form on the manufacturer's website (for multiple medications, apply to each company separately). Sometimes, proof of income is required, and a section on the application is to be filled out by your healthcare provider. Most programs need to be reapplied to yearly.
NeedyMeds is an organization that helps provide information on:
Government programs
Low-cost or free medical and dental clinics
Prescription assistance programs
Programs to help those who cannot afford medication and healthcare costs
Condition-specific financial aid programs
Search tools by drug name
Program phone numbers
Application links
Eligibility guidelines
Application requirements
Other resources include:
Summary
Living with epilepsy can be isolating, but support groups can be a way to connect with others who understand your experiences. They also are a place to share resources and information.
Support groups are available in a number of formats including in person and online. Organizations such as the Epilepsy Foundation are helpful for finding support groups in your area.
If you are living with epilepsy, or caring for someone with epilepsy, check with your local epilepsy organizations, ask your healthcare provider, or use a search tool to find a support group that works for you.
Frequently Asked Questions
Can you qualify for Social Security Disability Insurance (SSDI) benefits with epilepsy?
The Social Security Administration (SSA) considers epilepsy a disability. People with epilepsy can qualify for disability benefits if they meet the criteria listed in the SSA's Blue Book of disabling conditions.
What’s living with epilepsy like?
Most people who have epilepsy can lead normal lives with their seizures controlled by medication. People with epilepsy need to take extra precautions to protect themselves in case a seizure occurs, such as not swimming alone. How epilepsy presents, and how much it affects a person's life, varies from person to person.
Does epilepsy go away with age?
For some people, epilepsy is a lifelong condition that requires long-term treatment. For others, their epilepsy can go into remission, sometimes permanently, over time.
