The Epilepsy & Seizures 24/7 Helpline: Restoring Hope & Providing Resources

National Information & Referral Day is Friday, November 16, 2018, and we are celebrating the Epilepsy Foundation’s Epilepsy & Seizures 24/7 Helpline. The Helpline is here for the epilepsy community at all hours, every single day. The first national helpline to receive accreditation by the Alliance of Information and Referral Systems (AIRS), our Information Specialists respond to over 13,000 contacts a year by phone, email, social media, postal mail, and questions posted on our website. The Helpline offers supportive listening and helps to connect people with epilepsy, their families, and caregivers to resources and services nationwide.

Helping the Epilepsy Community for Over 50 Years

The Helpline started as the Patient Correspondence Room in 1968. This program answered mail, took phone calls, handled information and referral support to local Foundations, and published a resource guide. Advocacy for people with epilepsy was added to the list of services in 1976. Trained specialists continue to connect the community to local resources and services, including a variety of support groups.

The Helpline has a long history of providing support when the community needs it the most. In 1977 the Patient Correspondence Room answered over 1,000 letters that were in response to a “Dear Abby” column.

The Helpline recently celebrated 5 years of providing 24/7 service to the epilepsy community.

Helping Our Community Every Day

Here are a few stories showing how our information specialists touch lives every day:

• A person with epilepsy posted on epilepsy.com about having nowhere to live and experiencing unpleasant side effects from medications. This individual also expressed suicidal thoughts.
  • Our resource specialists connected them with epilepsy resources and transportation services in order to get treatment.
• A parent in an area of the United States not currently covered by a local Epilepsy Foundation called about their 20-year-old child. She was having trouble accepting her diagnosis and practicing self-management. The young person's resistance was harming their health, as well as academic and employment options.
  • Helpline staff connected the parent with a parent support group on epilepsy.com.
  • Links for support were given to the young person to help in coping and managing their epilepsy.
  • Parents were counseled on ways to help their child cope with their diagnosis.
  • The call specialist also helped parents recruit support from local and family helpers.
• An individual living outside of the United States contacted our information specialists about a relative living in the U.S. with epilepsy and mental illness. They believed this person wasn’t taking their medication and was putting themselves at risk.
  • Call specialist was able to work with a network partner and find a behavioral health residential program with 24/7 staff monitoring and medication management.
• A person with epilepsy struggling with memory problems called the Helpline with concerns that their guardian was taking advantage of them.
  • The Helpline was able to connect them with adult protective services and disability rights for evaluation and assistance.
  • The caller was connected to a local Epilepsy Foundation for access to support groups. 
• An inmate in prison that lives with tonic-clonic seizures contacted the Epilepsy Foundation by mail asking for information on seizures and first aid.
  • The Helpline sent posters on seizure first aid. A few weeks later, the individual thanked the Helpline. The first aid information was used by others to help him during a seizure.

Resources at Your Fingertips   

The Helpline also holds a large variety of resources on epilepsy.com. These resources are there to assist you in answering the questions that matter to you right now. Explore them to today.

Available to You 24/7

Do you have a question? Are you worried about a loved one living with epilepsy? Visit us online or call 1-800-332-1000 (en Español 1-866-748-8008) today. We are here to help. Phone interpreter services are available in over 200 languages.