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
Epilepsy Information Service
Medical Center Boulevard
Winston‑Salem, NC 27157‑1078
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
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
American Academy of Pediatrics
Child Neurology Society
Free Electronic News From the AAMC
International Bureau for Epilepsy
International League against Epilepsy
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.
AED (Antiepileptic Drug) Pregnancy Registry
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
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.