The internet creates a support group for people once isolated by epilepsy.
Epilepsy is a condition marked by recurring, unprovoked seizures. It affects 50 million people worldwide and can range from what looks like a brief staring episode to full blown and frightening grand mal seizures. Because it’s a neurological disease that many people avoid talking about, sufferers and their families may feel isolated. I was diagnosed with a seizure disorder in my 40’s after a lifetime of what I thought were only fainting spells. Luckily, with good medical treatment I was able to keep my drivers license and suffered no further ill consequences. Initially, though, I must admit that even with a nursing background my self image changed drastically. For a brief time I thought of myself as a person with a disability instead of the healthy, successful working mom that I was. The larger problem was that I had no one to talk to about it.
In the past, people with similar medical problems used to join groups in order to share their stories and offer support to each other. Symptoms that they were uncomfortable discussing anywhere else could be freely discussed within their support group, and these friendships became an important tool for healthy recovery. The Internet now enables us to do nearly the same thing online. The blogger can remain anonymous while at the same time be very visible and present to the blog readers. Scott shares his history of 20 years of seizures and how it has affected his life at http://scott-lwe.blogspot.com.
The website http://my.epilepsy.com is an initiative of the Epilepsy Therapy Development Project. The Project, founded in 2002 by three fathers of young children and their doctors has now served 2.7 million patients. The Project supports epilepsy research and through the website is a comprehensive source of information for patients, neurologists, and the therapeutic community. On the homepage it reminds readers that it is “your place to read, write, and live with epilepsy.” The interactive website allows readers to explore a forum and share their thoughts through blogging. It has a chat room to enable communication in real time, and also a resource library and resource specialist. For families learning to cope with the disease, patients having a difficult time finding good control, or those unable to find answers to their questions, it will be a good place to start.
Christine Contillo RN, BSN, has worked as a nurse since 1979, and has written extensively for various nursing publications as well as the New York Times.
This article is from workingnurse.com.