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Coping with your Epilepsy Disorder
Wednesday, July 28, 2004  11:35:00 AM

by Stacey Chillemi



Self-Help
It''s hard sometimes to understand how God can use a disorder, such as, epilepsy in our lives to bring about something good... but he can. It''s hard to understand why He sometimes allows bad things to happen to His people... but He does.

When something terrible enters your life many things happen. You go into shock, dispair,you become angry (why me?)you go into denial and to top it off you have to rearrange your life so you can live with the disorder or disease that has entered your life. For my first book I interviewed 400 with epilepsy. I learned a lot. Many people were angry at the world, angry at God, at their parents, everyone you could imagine. This is not a way to live life. Everyday is a blessing. We don''t know long how long we have to live, so each moment we cannot take for ganite. We have to live life to the fullest. I learned that when My cousin lost her daughter to a illness in a day in 1/2. So I stopped being in denial and I started to look at life in a positive way. Everyone has their own way of looking at life positive. You need to do what works for you. Everyone will have their ups and downs in life. The key is to learn how to get over the stump and continue on your journey, so you live a healthy productive life. Last night I had a terrible seizure, but I wouldn''t let it get me down. I turned it into a joke. I said to my husband, "Dame, would you believe I broke a nail!!!"


 

You don't need me to tell you these things.  God has brought you through difficult  times before, and he will help you with your seizures.  But until He makes things clear, just remember you're not alone.

Having to cope each day with epilepsy is tough.  Many people with epilepsy feel as though they are alone.  They feel they are trying to battle the disorder all by themselves.   People who do not have the disorder, ask me “ How can epileptics feel they are battling epilepsy alone when they have doctors, family and friends to comfort them”.   To live with the disorder, one needs to communicate with people who have the same disorder.  It gives one the opportunity to open your heart and share your unsettled emotions about how it feels to have epilepsy. 

One way of doing this is to subscribe to Epilepsy USA. This is a small newspaper that the Epilepsy Foundation writes.  They send the newspaper to you every two months once you become a member.  The newspaper informs you about what is going with epilepsy.  It has a section where it lists addresses of others with epilepsy that are looking for pen pals.  The newspaper also tells you about different events around the states that are constantly going on that you can participate in.  For information you can write to the main Epilepsy Foundation in Maryland.

The address is:



4351 Garde City Drive

Landover, MD 20785 

If you do not already subscribe to this newspaper than I strongly suggest that you begin too.  The newspaper is one way to help give you encouragement, so you can focus on your life and look at epilepsy in a positive way.       

This is important because one can easily become depressed focusing on the negative aspects of epilepsy and wallowing in self-pity.  This is why support from other individuals who suffer from the same disorder is so important.   Understanding what someone with the disorder goes through is difficult, if you don’t experience it yourself.

There are many people on this planet who have epilepsy.  Below listed other  organizations and support groups trying to help people with epilepsy and their families.

National Epilepsy Library

1‑800‑EFA‑4050

Epilepsy Information Service

Medical Center Boulevard

Winston‑Salem, NC 27157‑1078

1‑800‑642‑0500

Internet Resources

www.efa.org





The Epilepsy Foundation is a national organization that works for people affected by seizures through research, education, advocacy and service.  National programs include a toll-free informational service (1-800-EFA-1000), research, professional education, legal and legislative advocacy and employment issues.

 

Epilepsy Foundation of America Gene Discovery Project

www.epilepsygene.org

The purpose of this project is to educate families with epilepsy about current research in genetics and to join in a research partnership with international medical centers to identify the gene for epilepsy and their family.

 

American Academy of Neurology

www.aancom:80/home.html

American Academy of Pediatrics

www.aap.org

Child Neurology Society

www.umn.edu/cns

Child-Neuro Website

www.waisman.wisc.edu/child-neuro/

Free Electronic News From the AAMC

www.aamc.org/events/aamcstat/aamcnews.htm

International Bureau for Epilepsy

www.who.ch/programmes/ina/ngo-37.htm

International League against Epilepsy

www.websciences.org/engel




The international League against Epilepsy’s objective is to advance and disseminate knowledge concerning epilepsy.  Membership consists of national and professional organizations and individuals involved in research and interested in exchange of scientific information concerning epilepsy.

Epilepsy Ontario

www.epilepsyontario.org/links/index.html

AED (Antiepileptic Drug) Pregnancy Registry

1-888-233-2334

AED (antiepileptic Drug) Pregnancy Registry is the first North american Registry for pregnant women who are taking any AED-old or new, monotherapy or polytherapy to prevent seizures.  All information is kept confidential.  Educational materials will be provided.  Enrolled women will be asked to provide through their doctors information about the health status of their infants.  The findings will be analyzed to assess the fetal risk from all AED in pregnancy.

Registry Site Genetics & Teratology Unit

Massachusetts General Hospital

Fax: (617) 724-8307

Email: aedregistry.helix.mgh.harvard.edu

Web site: http://neuro-www2.mgh.harvard.edu/aed/registry.nelk

Epilepsy can be treated.  These are just some of the organizations and support groups.  If you would like to learn more about epilepsy or know someone with epilepsy that has questions, you can contact me at epilepsyusa.aol.com.  Remember, never lose hope, for every problem there is always a solution.


 


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