For those who know EG’s story of near-death and her journey back to the stage, and have wanted to know more about Encephalitis, we’ve compiled some information here.
You can read EG’s story here. http://www.EGKightMusic.com/egs-story
EG’s photograph, entitled “Fog,” depicting her view of the world after a life-changing illness, placed 3rd a few years ago, in the Encephalitis Society’s #ShowYouKnow contest, aimed at raising awareness for World Encephalitis Day.
In their quest to learn more about this illness, EG and her family and friends found that there aren’t a lot of answers out there, for her and her fellow survivors whose stories she reads on the forum. But she did learn that the Johns Hopkins Encephalitis Center is one of the only dedicated centers in the United States that provides expert clinical care for patients with encephalitis. The number of people diagnosed each year with encephalitis is not as great as cancer or heart disease, so this illness doesn’t get the attention it deserves. We want to change that.
EG is now committed to raising awareness about Encephalitis, by sharing her story on and off the stage.
And her manager, Sunny Stephens, is a founding board member of http://www.Encephalitis411.org.
A US based non-profit, this organization is dedicated to raising awareness, promoting research, and providing resources for survivors, caregivers, and family members.
According to Dr. Arun Venkatesan, Director of the Johns Hopkins Encephalitis Center:
– The overall incidence of encephalitis is between 5-10 per 100,000, in both Westernized and tropical settings.
– That translates into between 20,000-35,000 cases yearly in the U.S.
– It is likely that factors such as increased travel, globalization, and environmental changes will expand the geographic distribution of some of the insect-borne encephalitides, thereby increasing the incidence of encephalitis overall.
– About 50% of the time, the specific cause of encephalitis cannot be identified.
– Encephalitis is associated with a mortality of 5-15%.
– The majority of survivors note significant physical, mental, and/or emotional changes that can be quite disabling including problems with memory, concentration, attention, mood, pain, seizures, fatigue, and headaches.
– Significant changes may occur in the ability to function day-to-day even if there is a complete physical recovery.
Johns Hopkins Researchers Identify Conditions Most Likely to Kill Encephalitis Patients
The Encephalitis Center
If you are a survivor, or have a loved one who is, consider joining Encephalitis Global, started in 2007 by Wendy Station, another survivor. They have welcomed over 7,000 members into their community. www.encephalitisglobal.org
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