Community Forum

Welcome!

Welcome to our community forums, full of support for people with epilepsy and their caregivers, including tons of advice and information on how to live a happy, healthy and productive life with epilepsy. Please register if you’d like to take part.

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Helpful Resources

What are some products, resources, and helpful links that help make dealing with your epilepsy better?

Information on the Ketogenic Diet

http://www.matthewsfriends.org
An informative and supportive website for those who wish to use the Ketogenic Diet as a treatment for childhood epilepsy. The aim of the website is to provide parents with an informed choice as well as promote the diet amongst health professionals so that it becomes more available.

http://www.stanford.edu/group/ketodiet/
Ketogenic diet website created by the Pediatric Neurology Division at Stanford University School of Medicine. In-depth information for both parents and health care providers.

http://www.charliefoundation.org
Website of The Charlie Foundation, a group dedicated to promoting the use of the ketogenic diet for children with epilepsy.

http://www.hopkinsmedicine.org/
neurology_neurosurgery/centers_clinics/epilepsy/
pediatric_epilepsy/ketogenic_diet.html
The Pediatric Epilepsy team at Johns Hopkins has helped patients manage the ketogenic diet since its beginnings in the 1920s. It is the premier center in the world for clinical and research expertise regarding the ketogenic diet, having enrolled hundreds of children on the ketogenic diet and the modified Atkins diet.

http://www.stanford.edu/group/ketodiet/ketospan.html
La Dieta Cetogénica: Materiales de referencia para ustedes y su familia, el médico o el pediatra, en español (Centro de Epilepsia de Stanford).

 

Helping Children Understand Epilepsy/ Information for the Parent or Guardian

Epilepsy Government Agencies Centers for Disease Control and Prevention (CDC)

CDC, an agency of the U.S. Department of Health and Human Services, promotes health and quality of life by preventing and controlling disease, injury, and disability. Within CDC, the National Center for Chronic Disease Prevention and Health Promotion is charged with preventing death and disability from chronic diseases and with promoting maternal, infant, and adolescent health and healthy personal behaviors. 

The CDC epilepsy program, which is within this center, conducts epilepsy program activities in the areas of improving care, improving communication and combating stigma, self-management, surveillance and prevention research, increasing public awareness and knowledge, and strengthening partnerships. 

NATIONAL ENTER FOR PREVENTION HEALTH PROMOTION Centers for Disease

Control and Prevention

4770 Buford Highway

N.E., MS K51 Atlanta, GA 30341–3724 http://www.cdc.gov/epilepsy

 

National Institute of Neurological Disorders and Stroke (NINDS)

NINDS is an agency of the U.S. Department of Health and Human Services and a component of the National Institutes of Health. It is the leading supporter of biomedical research on disorders of the brain and nervous system.

 

National Institute of Neurological Disorders and National Institutes of Health

Building 31, Room 8A-06 Bethesda, MD 20892 http://www.ninds.nih.gov

 

Health Resources and Services Administration HRSA is an agency of the U.S. Department of Health and Human Services. Its mission is to improve and expand access to quality health care for all, including people with epilepsy.

 

Health Resources and Services Administration Maternal and Child Health Bureau Division of Services for Children with Integrated Services Branch, 18A-18 Rockville, MD 20857 http://www.hrsa.gov

 

Non-Government Agencies Epilepsy Foundation (EF) EF is a national organization that conducts research and provides education, advocacy, and other services for people living with epilepsy. The Epilepsy Foundation Web site offers detailed information on all aspects of epilepsy as well as on Epilepsy Foundation’s programs and services, news, and publications. EF state affiliates provide services on the local level in many communities. Some EF affiliates have support groups specifically for parents. For a complete listing of state affiliates or to find the one closest to you, please contact the Epilepsy FOUNDATION 4351 Garden City Drive Landover, MD 20785

http://www.epilepsyfoundation.org

 

Epilepsy Foundation eCommunities:  Epilepsy Foundation provides e-communities that allow for online chats and dialogue among common interest groups including parents of teens with epilepsy. For a listing of groups or to join a group, please visit:

http://www.epilepsyfoundation.org/ecommunities.

 

Epilepsy Foundation Resource Library:  Epilepsy Foundation provides an extensive resource library on its Web site. All topics related to epilepsy including searches and information (for free or for a nominal fee to covering copying costs) are posted.

 

Resources include: EpilepsyUSA—Epilepsy Foundation’s bimonthly magazine and a good resource for finding out about advances in the medical and research fields, upcoming EF events, and the lives of people, including young people living with epilepsy.

 

Epilepsy: Part of Your Life—Offers guidance on medical treatment and advice for living a healthy life, adjusting to epilepsy, reducing the frequency of seizures, and understanding associated feelings. Answers to Your Questions about Epilepsy—Written for teens. Includes answers to teens’ questions on why taking medicine on time are so important; the interactions and dangers of mixing medicine, drugs, and alcohol; and the use of birth control. Epilepsy: Questions and Answers about Seizure Disorders—Offers answers to questions about epilepsy, seizures, first aid, treatment, daily life, and the EF. Safety and Seizures: Tips for Living with Seizure Disorders—Reviews safety issues that may arise when seizures occur. Medicines for Epilepsy—discusses various types of Surgery for Epilepsy—Covers current surgical treatment

 

American Epilepsy Society - This national society promotes research and education for professionals dedicated to the prevention, treatment, and cure of epilepsy.

 

American Epilepsy Society

342 North Main Street West Hartford, CT 06117–2507

 http://www.aesnet.org

 

National Association of Epilepsy Centers (NAEC) - The NAEC is a nonprofit trade association whose members include more than 60 specialized epilepsy centers across the United States. This association can help you find an epilepsy center close to your home.

 

NATIONAL ASSOCIATION OF EPILEPSY

5775 Wayzata Boulevard Suite 200

Minneapolis, MN 55416

http://www.naecepilepsy.org

 

Books and Support Groups

·         Epilepsy You’re Not Alone Written By Stacey Chillemi 

·         A Parent's Guide to the Teenage Years by B. B. Williamson 

·         Teenagers & Parents: Ten Steps for a Better by Roger W. McIntire 

·         Parenting Teens with Love & Logic: Preparing Adolescents for Responsible Adulthood by Jim Fay and Foster W. Cline 

·         Epilepsy: Questions and Answers by J. W. Sanders and Yvonne Hart Epilepsy: 199 Answers (A Doctor Responds to His Patients’ Questions) by Andrew N. Wilner, M.D. 

·         Growing Up With Epilepsy: A Practical Guide for Parents by Lynn Bennett Blackburn, Ph.D. 

·         The Official Patient's Sourcebook on Seizures and Epilepsy: A Revised and Updated Directory for the Internet Age published by Icon Health Publications

·         Epilepsy: The Ultimate Teen Guide by Kathlyn Gay and Sean McGarrahan 

·         Let's Talk About Epilepsy by Melanie Apel Gordon 

·         Women with Epilepsy: A Handbook for Health and Treatment issues by Martha J. Morrell, M.D.

·         Epilepsy and the Family: A New Guide (1999 edition) by Richard Lechtenberg, M.D. 

·         Epilepsy: Patient and Family Guide by Orrin Devinsky, M.D. 

·         Epilepsy and Seizures: Everything You Need to Know by Donald Weaver, M.D. 

·         The Last Book in the Universe by Rodman Philbrick

 

 

Helpful Websites

Citizens United for Research in Epilepsy http://www.cureepilepsy.org 

Washington University at St. Louis Pediatric Epilepsy Center http://www.neuro.wustl.edu/epilepsy/pediatric/index.html 

Tufts University Child & Family Web Guide http://www.cfw.tufts.edu 

Epilepsy Web Ring for Parents http://www.kidsepilepsy.com Epilepsy.com—sponsored by the Epilepsy Project

Epilepsy Websites: 

  1. Epilepsy.com - Epilepsy and seizure diagnosis, treatment, and information for people with epilepsy.  http://www.epilepsy.com
  1. http://www.braintalk.org
    BrainTalk Communities: Online patient support groups for neurology (from Massachusetts General Hospital) -- a large and active site with separate forums for epilepsy and a very wide range of other disorders.
  1. http://www.cdc.gov/nccdphp/epilepsy/index.htm
    National Center for Chronic Disease Prevention and Health Promotion: A page dedicated to some general information on epilepsy.  The National Center for Chronic Disease Prevention also has a toolkit for parents of teens with epilepsy: http://www.cdc.gov/epilepsy/toolkit/index.htm
  1. http://www.columbia.edu
    a website for The IRELAND Project, based at Columbia University in New York.  The IRELAND Project is a multicenter genetic linkage analysis study designed to look for the genes that cause seizures in Rolandic Epilepsy and associated difficulties in reading and speech.
  1. http://www.emedicinehealth.com/
    a website specifically designed to address health issues such as epilepsy.  The site contains articles written by physicians for patients and consumers.
  1. http://www.epilepsycenter.com/
    The Epilepsy Center is an organization that provides services in northwestern Ohio. Features safety tips, posters for sale, and extensive links.
  1. http://www.epilepsyfoundation.org/
    Website of The Epilepsy Foundation, the U.S. national organization that works for people affected by seizures.  A good place to get reliable information, especially on legal affairs and community services.
  1. http://www.epilepsyinstitute.org
    the website of The Epilepsy Institute, a social-service organization for people with epilepsy in New York City and Westchester County, NY.
  1. http://www.epilepsytoronto.org
    Website of Epilepsy Toronto, a non-profit organization dedicated to the promotion of independence and optimal quality of life for all people with epilepsy and their families.  They offer a range of epilepsy support services, information programs and education to the public.
  1. http://www.epipro.com
    Epilepsy & Brain Mapping Program: A comprehensive healthcare center in Pasadena, California, for treating adult and pediatric epilepsy and other neurological disorders with seizures.
  1. http://familydoctor.org/214.xml
    Familydoctor.org, a website created by the American Academy of Family Physicians: General information on epilepsy.
  1. http://www.hsc.stonybrook.edu
    the website of the Long Island Comprehensive Epilepsy Center.
  1. http://www.naec-epilepsy.org
    the website of the National Association of Epilepsy Centers.  Find a comprehensive epilepsy center near you!
  1. http://www.neuro.wustl.edu/epilepsy/
    Epilepsy information and local resource centers in St. Loius, MO.
  1. http://www.nichcy.org/pubs/factshe/fs6txt.htm
    National Dissemination Center for Children with Disabilities: Epilepsy information and resources.
  1. http://www.nyuepilepsy.org
    Website of the NYU Comprehensive Epilepsy Center, the largest epilepsy center in the United States.  The Center offers testing, evaluation, screening, treatment, drug trials, alternative therapies, and surgical intervention for children, adolescents, and adults with all forms of epilepsy.
  1. http://www.nyuepilepsy.org/cec/
    New York University-Mount Sinai Comprehensive Epilepsy Center website.  Information and useful links.  The center includes a special program for people with tuberous sclerosis.
  1. http://www.nyufaces.org
    the website of Finding A Cure for Epilepsy and Seizures (f.a.c.e.s.).  f.a.c.e.s. is an epilepsy organization that funds epilepsy research, education and awareness, and community building events for people with epilepsy.
  1. http://www.paceusa.org
    Parents Against Childhood Epilepsy is an organization that provides support for parents of children with epilepsy.  It features information regarding fundraising efforts in support of advances in medical research of epilepsy.
  1. http://specialchildren.about.com/cs/epilepsy/
    A list of epilepsy websites primarily for parents of children with epilepsy.
  1. http://pppl.tblc.org/sesweb/
    Suncoast Epilepsy Association: A Florida, non-profit organization that provides services to individuals with epilepsy in Pinellas and Pasco Counties.
  2. http://www.4pep.org
    The Pediatric Epilepsy Project at UCLA (PEP) was formed with a single, all-important mission: to raise funds, provide financial support and increase community awareness to help sustain the Division of Pediatric Neurology at UCLA.
  3. http://library.thinkquest.org/J001619/
    "Growing Up with Epilepsy" is a ThinkQuest website created by two young, gifted students with their teacher as their coach.
  1. http://www.bgsm.edu/bgsm/surg-sci/ns/epilepsy.html
    Wake Forest University School of Medicine, Winston-Salem, North Carolina, and Department of Neurosurgery: Contains general facts on epilepsy along with links to numerous websites for the epilepsy community of Wake Forest, as well as, various other sites containing helpful information on epilepsy.
  1. http://faculty.washington.edu/chudler/epi.html
    University of Washington: Professor's website containing epilepsy information and resources.
  1. http://www.bbc.co.uk/health/epilepsy
    A UK website with information on epilepsy and local resources for UK residents living with epilepsy. 
  1. http://www.bcepilepsy.com
    The BC Epilepsy Society is a non-profit, charitable organization dedicated to serving the British Columbians living with epilepsy and their families.
  1. http://www.epilepsiemuseum.de
    A German online museum that features artwork, history, and virtual tours.
  1. http://www.epilepsy.ca
    the website for Epilepsy Canada, featuring information on Canadian resources as well as general facts.  Also includes "Kidz Korner" with reassuring explanations for children.
  1. http://www.epilepsyontario.org
    Epilepsy Ontario: A website with information on epilepsy and support and volunteer opportunities for the local Ontario epilepsy community.
  1. http://www.epilepsy.org.au
    Epilepsy Association Australia: A growing site with information offered separately for adults, children, and teens.  Good general information for everyone and offers of many services for people in Australia.
  1. http://www.epilepsy.org.uk
    the website of Epilepsy Action, the working name of the British Epilepsy Association.
  1. http://www.epilepsysupport.org.uk/
    Epilepsy Support: A British site offering patient-to-patient community support.
  1. http://www.epinet.org.au
    The website of the Epilepsy Foundation of Victoria, Australia.  You can participate in rating the websites included in the interesting list of links here, including some in other languages.  Also some good practical tips. 
  1. http://www.ibe-epilepsy.org
    the website of the International Bureau for Epilepsy, a European-based group dedicated to improving the non-medical aspects of life with epilepsy around the world.  The site also includes links to groups in many countries.
  1. http://www.ilae-epilepsy.org
    International League Against Epilepsy: A preeminent association of physicians and other health professionals working towards a world where no persons' life is limited by epilepsy.  This website contains plenty of helpful information on epilepsy.

Research

http://www.aesnet.org/
Website of the American Epilepsy Society, which promotes research and education for healthcare professionals.

http://www.centerwatch.com/patient/studies/CAT62.html
Center Watch: A comprehensive list of epilepsy clinical studies going on throughout the United States.

http://www.ninds.nih.gov/index.htm
the site of the National Institute of Neurological Disorders and Stroke, the part of the U.S. National Institutes of Health that covers brain disorders.  News about research developments and clinical trials. 

Epilepsy Support Groups

  1. http://www.chrissyandfriends.org/
    Non-Profit organization that has support groups for children and teens with epilepsy and parents of children with epilepsy support groups in the NYC area.
  1. http://www.epilepsypenarth.ik.com
    A support group situated in South Wales, open to anyone with epilepsy to join for help and support.
  1. http://dspace.dial.pipex.com/epilepsybereaved/
    Information about SUDEP and other epilepsy deaths.  Bereavement support and information on SUDEP research.  Free booklet for young people with epilepsy.
  1. http://www.stixdesigns.com.au/epilepsy-support/index.htmlIncludes information, links and articles relating to epilepsy and related topics.
  1. http://www.epilepsysupport.org.uk/
    Maintained by someone with the disease, this site offers support, advice, and useful links.
  1. http://groups.yahoo.com/group/ketogenic/
    This is a support group for parents, family members, and caregivers who are using the Ketogenic Diet as a means of control for epilepsy or seizure disorders.
  1. http://groups.yahoo.com/group/childhoodepilepsy/
    This mailing list is intended to support parents and other caregivers of children diagnosed with a form of epilepsy.
  1. http://groups.yahoo.com/group/parents-of-kids-with-epilepsy/
    This Group is for Parents of Children With Epilepsy.
  1. http://home.ease.lsoft.com/Archives/Epilepsy-L.html
    An E-mail based support group for people with epilepsy and those who care about and for them.
  1. http://groups.msn.com/laforabodydiseaseresearchtalk
    This is a site about lafora body disease it has a message board and a links page.
  1. http://groups.yahoo.com/group/Epilepsy_Advocates/
    Our group is made up of people that suffer from Epilepsy, parents of children with Epilepsy, people whom have previously had Epilepsy and friends of those suffering from Epilepsy.
  1. http://groups.yahoo.com/group/epilepsy/
    For people with or know someone with Epilepsy.  A place to talk, share stories, and for moral support.  All ages welcome.
  1. http://groups.yahoo.com/group/epilepsy-kids/
    Epilepsy-Kids offers support and information for parents of children diagnosed with any form of epilepsy.
  1. http://groups.yahoo.com/group/KuekidsAustralia/
    The Kuekids Australia mailing list is to help parents, families, and friends of children using the ketogenic diet who may also have food intolerance problems.
  1. http://www.healthboards.com/epilepsy/
    Healthboards.com message board for information and support on epilepsy.
  1. http://www.orgsites.com/mn/epilepsy
    A guided independent living experience designed to prepare adults diagnosed to live and work on their own.  Includes services, history, gallery, opportunities, and FAQs.
  1. http://www.users.bigpond.com/epilepsysupportgroup/Default.htm
    Offers information, events, issues, links, and contact details.
  1. http://www.cymepilepsysbytygwyn.co.uk/
    Epilepsy Support Group in Wales, UK.
  1. http://au.groups.yahoo.com/group/australian_epilepsy_group/

Yahoo! Group for giving support and sharing information.

  1. http://www.debraboard.org/cgi-bin/temp.pl
    A forum for people affected by this disorder.
  1. http://s4.invisionfree.com/VNS_Message_Board/index.php
    A message board designed for information exchanged related to the Vagus Nerve Stimulator.
  1. http://groups.yahoo.com/group/Christian-Epilepsy-Support/
    Christian oriented support for people with Epilepsy or family and friends of people with Epilepsy.
  1. http://groups.yahoo.com/group/Dating-and-Married-Life-with-Epilepsy/
    Made for people to discuss issues that come up when they are dating and married, including handling different situations, embarrassment, children, and fear.
  1. http://www.pokwe.org.uk
    A support web site for parent is of children with Epilepsy.  Conversations via our mailing lists and web content.  This group was designed by parents for parents.
  2. http://groups.yahoo.com/group/epilepsycircle/
    This support group is for all who have an interest in epilepsy, whether it is for you, a family member, a friend, pupil, or a child that has a seizure disorder or epilepsy.
  1. http://groups.yahoo.com/group/adultswithepilepsy/
    This club is for adults (those 18 and older) to discuss their experiences with epilepsy, including causes, treatment and coping skills.
  2. http://groups.yahoo.com/clubs/epilepsysupportgroup
    Supportive club to help those with this disease.  Includes free membership, message boards, and chat room.  Also joining instructions.
  1. http://www.esgs.org.uk
    Offers an extensive FAQ's and a section talking about the different drugs to control epilepsy.
  1. http://www.wsm.inuk.com/epilepsy.htm
    Provides information about coping with this disease, seizures, and convulsions. Details about the various types, and provides free help and advice using its email and telephone helplines.
  1. http://www.geocities.com/epilepsy911
    Providing worldwide support for people with epilepsy.  Includes FAQ's, links, support groups, and a pen pal site.
  1. http://groups.yahoo.com/group/ChristianEpilepsyPrayerGroup/
    Are you a Christian living with or caring for someone with epilepsy?
  1. http://groups.yahoo.com/group/seizurealertdogs/
    This group unites people who benefit from seizure alert or assistance dogs as well as people with epilepsy who benefit from a dog's companionship.  We also Welcome people who want to learn more about these wonderful dogs.
  1. http://groups.msn.com/doosesyndrome
    This is a group about dose and it has links to other websites but almost all information can be seen by nonmembers of the group.
  1. http://groups.yahoo.com/group/EpilepsySurgeryGroup/
    We deal with those who have had brain surgery, Vagus Nerve Stimulator surgery, and Gamma Knife Radiosurgery.  Our members are here to help answer any questions you may have.  All are welcome, whether you are a surgery candidate or not.
  1. http://groups.yahoo.com/group/real_epilepsy/
    A group based in Indiana.  Epilepsy and seizure disorder resources and support.
  1. http://groups.yahoo.com/group/RareEpilepsySyndromes/
    Rare epilepsy is very difficult for all families involved.  This group has been made to help educate and support these families.  Rare epilepsy's included.  ESES/CSWS, LKS, LGS, Begnign Rolandic, and any other hard to recognize epilepsy.
  1. http://groups.yahoo.com/group/epilepsychat/
    A Place For Chat, Info, Support, And To Have Fun
  1. http://www.pokweuk.org
    A UK based supporting website containing epilepsy information, children's stories, and a forum for parents of children with this disorder.
  1. http://groups.yahoo.com/group/TLE/
    Discussion of temporal lobe epilepsy and/or partial complex seizure disorder.  For sufferers and friends/family of sufferers.
  1. http://beehive.thisisessex.co.uk/epilepsy
    Local branches of the national organization providing support, advice, and information on living with epilepsy
  1. http://health.groups.yahoo.com/group/doosesyndrome/
    For parents of children who have Doose Syndrome rare, severe, intractable epilepsy of early childhood.  Group provides support for parents along with insight into the management of this disorder.
  1. http://groups.yahoo.com/clubs/epilepsy_surgery
    Details about this group which is for those who have thought of (or had) having brain surgery or Vagus Nerve Stimulator surgery.  Registration required.
  1. http://groups.yahoo.com/group/worldofepilepsy/
    For people around the globe who have epilepsy and would like to share their recent or previous experience with epilepsy.
  2. http://groups.yahoo.com/group/wivesofmenwithepilepsy/
    It is the hope of this club to address problems, offer support, and encouragement to the wife whose husband has epilepsy.
  1. http://community.healingwell.com/community/?f=23
    Message boards and chat dedicated to sharing information, offering support, and coping strategies to manage this disorder.  Community moderated by volunteers.
  1. http://groups.yahoo.com/group/epilepsycured/
    We are people sharing information on curing/preventing epilepsy - seizures.  This is a support group for patients, parents, children, family members ... anyone and everyone.
  1. http://groups.yahoo.com/group/doosesyndrome/
    For parents of children who have, or who may have Myoclonic-Astatic Epilepsy, otherwise known as Doose Syndrome, a rare, severe, intractable epilepsy of early childhood.
  1. http://dir.groups.yahoo.com/dir/Health___Wellness/Support/Diseases_and_Conditions/Epilepsy?
  1. http://groups.yahoo.com/group/epilepsysupportandeducation/
    We are a growing community to help bring people with epilepsy from all corners of the world to share experiences, thoughts, and provide information.  All ages are welcome and you do not have to be epileptic to join.
  1. http://groups.yahoo.com/group/lennox-gsibs/
    Lennox Gastaut is a severe form of Epilepsy.  This group is for the siblings (brothers & sisters) of those affected by LGS, or a seizure disorder.
  1. http://groups.yahoo.com/group/epilepsysupport4kids/
    This group is a support group for kids with epilepsy, kids interested in improving their condition by natural means.
  1. http://groups.yahoo.com/group/ToddlerswEpilepsy/
    This is a group for parents with toddlers that have Epilepsy.  Parents with infants are welcome too.
  1. http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=topics&forum=Epilepsy&number=33

Health Websites

  1. Parenting Working Things Out With Your Teenager http://www.families.qld.gov.au/family/familiesfirst/ publications/documents/pdf/working.pdf
  1. University of Washington Adolescent Health Transition Project http://depts.washington.edu/healthtr
  1. Administration for Children and Families http://www.acf.dhhs.gov
  1. Support for Families of Children with Disabilities http://www.supportforfamilies.org/internetguide
  1. Family Education http://www.familyeducation.com
  2. Fathers Network http://www.fathersnetwork.org
  1. iVillage http://www.ivillage.com/topics/parenting
  1. Brave Kids http://www.bravekids.org DisabilityInfo.gov http://www.disabilityinfo.gov