May 2005 Note to Readers: The following article was written by Wendy Station of Vancouver Canada, Encephalitis Global. This article was recently published in the newsletter of the Florida Mosquito Control Association called “Buzz Words”. This article provides some insight on what it is like to survive encephalitis caused by St. Louis Encephalitis, Eastern Equine Encephalitis or in this case West Nile Virus. The Realities of Encephalitis On a sunny April morning back in 1999, I sat down at my office desk, for the very last time. I had been trying to shake a wee headache all morning... finally, I told my supervisor that I’d have to go home. That’s the last thing I remember for the next four weeks. I don’t recall driving home. I don’t recall being miserable to my family in the following days. And, I don’t recall my own husband taking me to our local hospital’s emergency room, and telling them, ‘something isn’t right about Wendy.’
It was my amazing good fortune that one of the medical professionals suggested that I may be suffering from encephalitis... inflammation of the brain. I was whisked into treatment, and my life was saved. Unfortunately, while this amazing doctor was saving my life, my family was struggling to learn more about encephalitis. Our local library, the internet, asking friends... no one seemed to really understand. Once I came home, problems multiplied. My parents were babysitting me as my husband went to work and our children went to school. On that first morning home, I started by seeking a spoon to stir my coffee. I was searching through a pile of newspapers, asking the dog, and checking in the freezer. As I was heading outdoors in the rain to search the backyard for a spoon, my mother had to show me where the spoons are kept – in my own kitchen drawer. This was one piece of knowledge, which had to be re-learned; one, of hundreds.
Encephalitis is swelling (inflammation) of the inner area of the brain. Damage done is permanent. Recovery from encephalitis is often professionally measured in a two-year time span, as neighboring areas of the brain struggle to re-learn skills and abilities which have been lost. This struggle can have a variety of success. There are different types of encephalitis, including St. Louis Encephalitis, La Cross encephalitis, Eastern Equine Encephalitis, Western Equine Encephalitis, Rasmussen Encephalitis, Herpes Simplex Encephalitis - and now West Nile encephalitis, the newest arrival.
In 2003, The Ohio State University Extension Fact Sheet on West Nile virus states: “There is no specific treatment for WNV encephalitis or fever. All care is supportive, including hospitalization, respiratory support and intravenous fluids.”* An August 2004 media release from the New York State Department of Health and Hygiene confirms, “Nearly two-thirds of severely infected patients, especially elderly, still suffer physical and mental impairments 12 months after falling ill with West Nile.”
Over and over again, the public is told of how few fatalities there are after the touch of West Nile. Unfortunately, the public has little knowledge or interest in encephalitis survivors - people who are struggling to face life itself, after surviving this horrible disease. Consider memory loss, where a fiancee’ is heartbroken when her intended really does not remember her or the promise that they shared. And there is a man’s anger with himself, when his spouse is now the solo family bread-winner. Young people, who now face their education with frustration, as their peers move ahead and leave them behind. Or even a farmer, who can no longer return to his fields.
In the year 2000, I was capable to return to my computer at home, and began searching for information about encephalitis. I found one registered charity, in the United Kingdom. I contacted them by email to see if they would spread to North America, and they replied, “We will do England, Wendy. You can do the rest of the world.” My website, Encephalitis Global was born.
Since that time, my husband and I have been invited to a farming community in Oregon, where I spoke in the local community centre about encephalitis after one of the local farmers was hospitalized. Another time, we took a break from a holiday, to meet with a family in Ft. Lauderdale Florida, where the young father had been recently diagnosed. I am proud to say that the NORD (National Organization for Rare Disorders USA) includes my name as a contact for people who seek more information. Encephalitis Global qualifies for the logo of the Health on the Net Foundation in Switzerland. The third annual international FACES (Friends and Caregivers Encephalitis Survivors) Conference proudly took place earlier this summer.
Previous to April 1999, I’d never heard of encephalitis. Now, I spend time every day to reach out and help other people understand. Encephalitis Global offers camaraderie, information and support to people touched by encephalitis. We are a community of survivors, loved ones, and caregivers, folks who have been touched... by encephalitis.
Wendy Station, Vancouver Canada, Encephalitis Global References: http://prevmed.vet.ohio-state.edu/docs/wnvfact.pdf Ohio State University Extension Fact Sheet “West Nile Virus for Physicians” http://www.nyc.gov/html/doh/html/public/press04/nyam-0812.html New York State Department of Health and Hygiene media release. |