How to Find an Epilepsy Support Group

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.

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
• By video conference

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.

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:

• FindTreatment.gov
• American Psychiatric Association Foundation
• American Academy of Child and Adolescent Psychiatry
• American Psychological Association

You can also ask a healthcare provider for a referral to a mental health professional.

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:

• The Medicine Assistance Tool
• Patient Assistance
• RxAssist
• Veterans Benefits Administration
• Rx Outreach
• FamilyWize
• Social Security Disability Help

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.