HELP FIND A CURE FOR AN ANCIENT CONDITON: EPILEPSY
Mar 18 '09
The Bottom Line Children with epilepsy need help in order to live normal lives.
Yes, I am an epileptic, along with about 4 million others in the US alone. This condition does not have a cure and is considered to be one of the most mysterious illnesses. Although I have lived with epilepsy for 30 years now and most of the time, have it under control with medication, initially, it was hell. I started having seizures at age 14 for no particular reason other than genetics. It took four years to get them under control so most of my adolescence was a series of tests, hospitalizations and numerous medications , some of which had horrible adverse side-effects. That was then but even now, there have only been discovered a couple of diets that might help or, in some cases, surgical procedures.
However, my main reason for recommending donations to related agencies is because of the children who suffer with epilepsy. I find it really distressing to see a child have one seizure, let alone some who have up to 60 per day. It is such a traumatic experience that involves pain, disorientation, depression and embarrassment. What child deserves a childhood filled with such horrible endurance.
It is not uncommon for people with epilepsy, especially children, to develop behavioral and emotional problems, sometimes the consequence of embarrassment and frustration or bullying, teasing, or avoidance in school and other social settings: National Institute of Neurological Disorders and Stroke
Yes, I remember this well. It is frightening for a child to witness another in the throws of a grand mal seizure and understandably, children tend to shy away from the inflicted, afraid that it might happen again.
Pre - nineteenth century, epileptic adults and children were ostracized and burnt at the stake, believed to be possessed by the devil. So glad I decided to be born later.
People with epilepsy are at special risk for two life-threatening conditions: status epilepticus and sudden unexplained death. I have known many epileptics during my life and 6 of them have passed due to injuries acquired during their fall into a seizure. I myself survived splitting a bathtub into two pieces with the back of my skull. Needless to say, that hospital stay was lengthy.
Epilepsy IS hereditary which made it very difficult for me when choosing to have children. I worry constantly about my grandchildren contracting this condition.
Research being done:
Scientists are studying potential antiepileptic drugs with goal of enhancing treatment for epilepsy. Scientists continue to study how neurotransmitters interact with brain cells to control nerve firing and how non-neuronal cells in the brain contribute to seizures. One of the most-studied neurotransmitters is GABA, or gamma-aminobutyric acid. Researchers are working to identify genes that may influence epilepsy. This information may allow doctors to prevent epilepsy or to predict which treatments will be most beneficial. Doctors are now experimenting with several new types of therapies for epilepsy, including transplanting neurons into the brains of patients to learn whether cell transplants can help control seizures, transplanting stem cells, and using a device that could predict seizures up to 3 minutes before they begin. Researchers are continually improving MRI and other brain scans. Studies have show that in some case, children may experience fewer seizures if they maintain a strict diet - called the ketogenic diet - rich in fats and low in carbohydrates.
I recommend donations to the following agencies to help find a cure for this invasive condition:
Epilepsy Foundation
8301 Professional Place
Landover, MD 20785-7223
mailto:postmaster@efa.org
http://www.epilepsyfoundation.org/
Tel: 301-459-3700 800-EFA-1000 (332-1000)
Fax: 301-577-2684
Epilepsy Institute
257 Park Avenue South
New York, NY 10010
mailto:website@epilepsyinstitute.org
http://www.epilepsyinstitute.org/
Tel: 212-677-8550
Fax: 212-677-5825
People Against Childhood Epilepsy (PACE)
7 East 85th Street
Suite A3
New York, NY 10028
mailto:pacenyemail@aol.com
http://www.paceusa.org/
Tel: 212-665-PACE (7223)
Fax: 212-327-3075
Charlie Foundation to Help Cure Pediatric Epilepsy
1223 Wilshire Blvd.
Suite #815
Santa Monica, CA 90403
mailto:ketoman@aol.com
http://www.charliefoundation.org/
Tel: 310-393-2347
Fax: 310-453-4585
Thank you for reading and if this leads to one discovery regarding relief for children with epilepsy, I feel it was a job well done.
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