Epilepsy Talk

24/7 Epilepsy Foundation Helpline | July 5, 2017

Do you have questions about seizures or epilepsy?

The Epilepsy Foundation’s Helpline is now available 24 hours a day, 7 days a week.

Trained information specialists are now standing by to answer your questions.

Each year more than 14,000 people contact the Helpline. The most common topics include:

  • Treatment options for seizures and other medical concerns
  • Legal issue assistance
  • Seizure safety and first aid assistance
  • Financial assistance
  • Information and materials requests
  • Finding a support group

Accredited information specialists who have more than 70 years of combined experience are available to answer your epilepsy-related questions and to connect you to the best support services.

The Helpline maintains an online database with detailed information on hundreds of national and local resources that support people with epilepsy and their families.

(You can search this database also at: epilepsy.com/epilepsy-seizures-247-helpline-resources.)

Using this comprehensive database, they can quickly find and connect you to the necessary resources. And if you need them to step in and advocate on your behalf, they can do that too.

Whether you are seeking a physician for a second medical opinion, need help paying for medication, are trying to find a support group, need to speak with a lawyer about possible discrimination, or just need to talk, they can help.

And if you want more information, specialists can send you a free educational packet with brochures and fact sheets.

Information specialists also provide follow-up support.

If you are going through a tough time, or having a personal crisis, information specialists are trained to check up on you, with your permission, to see how things are going.

Can they give medical advice?

No.

The Helpline does not provide individual medical advice. It is an information and resource helpline.

However, the specialists can help provide answers or connect you to resources that your health care team may not have.

How do I contact the Helpline?
Call 1-800-332-1000
Spanish (en Espanol) call 1-866-748-8008

Or email: ContactUs@efa.org. Questions submitted online or through email are typically answered the next business day.

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7 Comments »

  1. So many times especially since year 2000, I had called EFA, & CURE both, to find answers for my condition to stop seizures and to make aware of WHAT & HOW seizures can happen at every possibility that seizures can happen. They all told me what I already knew about, nothing new to stop or prevent seizures, and they never cared to put themselves in my shoes and walk the reality as I do. Still the same today if you call them as nothing ever changes with them, unless it is something like MEDICAL MARIJUANA & CBD oils that become ATM machines for neurologists & the drug industry. WE are always LAST on their list to provide help with a cure for seizures. They all approve that we are their rats or guinea pigs for the drug industries, NIH & others that uses OUR BRAINS as toys they can play with. BEEN THERE< DONE THAT,, and no more will that ever happen again unless I do it ALONE with out any of their approval. A few months ago CURE was going to send me emails for future studies & etc… NO emails have ever come in my inbox, as I did that same thing over 3 years ago with the same results. None of them care about us. WE"RE ONLY A NUMBER and AN OBJECT TO THEM ALL. As showing respect towards them,, remember THEY KNOW we have seizures, and to THEM,, we are different than the rest of THEIR world. Answer this,, WHY doesn't all & every 1 of the 50 states all have a SEIZURE SUPPORT GROUP in the state people live in ? I have to drive or someone take me to a Maryland or Virginia EFA group or whatever, & then you are well listened to or REJECTED based on what you say, & HOW the words you say can or will hurt the egos of others who have seizures, as the FEAR of everyone having a seizure that you know effects you, should not be TALKED ABOUT. Really ? So all people do eat foods, and diets & food chemicals NEVER needs to be discussed at group settings from EFA where i was told not to say more of what I was talking about when I only said 20% of the 100% I needed to ask others & say about to the EFA leaders. Nope I had NO RIGHT to make others think what could be happening to their brain as maybe we ALL may have had something in common. 2011 was my last public meeting with people who have seizures. Not my loss.

    Like

    Comment by C D — July 5, 2017 @ 4:02 PM

  2. I also tried to get help at least a month ago at EFA for their RARE EPILEPSY support, and never got to speak to a single person there. It will still be that way today if I called them and end up speaking to nobody. That is suppose to be a support service for people who are really in need for an answer & HELP ? They do not care if it is 56 years or 56 minutes that a person has seizures, and nobody gets back to you or cares to offer any answer for your desires to be seizure free or lowering the number of them, or seeing any different doctor who may know more than who you’re seeing now.

    Like

    Comment by C D — July 5, 2017 @ 4:07 PM

  3. I disagree about the doctor part, C D.

    I’ve known my Philadelphia Epilepsy Foundation chapter to recommend specific doctors, particularly from Jefferson.

    Like

    Comment by Phylis Feiner Johnson — July 5, 2017 @ 4:13 PM

  4. My daughter, aged 34, is scheduled for bariatric surgery, a gastric sleeve in 2 weeks. She has been told that people who are overweight often see a decrease in seizures after this surgery, and sometimes can discontinue seizure medications. Have you heard this information to be true?

    Like

    Comment by Betty Turner — July 5, 2017 @ 11:04 PM

  5. Reblogged this on catsissie.

    Like

    Comment by catsissie — July 17, 2017 @ 10:14 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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