Becky Dennis, advocate, author of the highly acclaimed Brain Wreck and encephalitis survivor, will speak on patient advocacy at the Encephalitis Global 2014 conference this Saturday, February 22 in La Jolla, California. The conference encephalitisglobal.org/faces2014 highlights the first annual World Encephalitis Day, which creates awareness about the devastating consequences of encephalitis, an inflammation of the brain.
Encephalitis strikes 20,000 Americans each year and roughly 500,000 people across the globe. Approximately 20 percent of encephalitis victims die. This brain injury can be triggered by many causes, including the herpes cold sore virus, mosquitoes, or auto-immune disorders. However, more than 50 percent of causes are unknown; and there is no cure.
Becky Dennis is a survivor of encephalitis and as a patient advocate is a trusted "go-to" resource for scarce information about this rare syndrome. With a tenacious drive and compassionate spirit, Dennis is putting encephalitis on the map.
"World Encephalitis Day marks an occasion to bring about more awareness for this overlooked brain injury," said Dennis. "It can happen to anyone, anytime, anywhere, at any age, and even to those in good health. In 2012, it became personal to our community when 174 people were struck with West Nile encephalitis here in Dallas County."
As a survivor, Dennis offers a unique perspective for patients. With caregivers, she is often asked to be a resource to coach both during the acute phase of crisis as well as help navigate the long-term recovery. Within the medical community, Dennis works with the International Encephalitis Consortium, a network of infectious disease professionals, neurologists, rehabilitation specialists and researchers who collaborate to reduce the global impact of encephalitis. Together the consortium works to improve survivor outcomes, identify causes, and improve diagnostics.
"Our country needs strong advocates like Becky to help provide more visibility to this destructive illness," said Arun Venkatesan, MD, PhD, Assistant Professor of Neurology; Director, Johns Hopkins Encephalitis Center and member of the International Encephalitis Consortium. "In some types of encephalitis such as herpes, swift treatment can be the difference between life and death. Being able to diagnosis it quickly underscores the need for greater awareness, especially in the medical community."
The cost of encephalitis is high. In the U.S., the cost of hospitalization is $2 billion per year, which does not include care of physicians, treatments or therapies. Also, more than half of survivors are unable to return to the workplace, reducing their annual income by 70 percent.
Most survivors require expensive rehabilitation to increase the likelihood of returning to a productive and fulfilling life or to better manage debilitating headaches, paralyzing exhaustion, motor challenges and memory loss. These treatments include physical, speech, cognitive, behavioral and occupational therapies.
The Encephalitis Society announced the new global initiative that hopes to raise awareness of this deadly brain condition. World Encephalitis Day will take place on February 22nd each year, and will involve people from every corner of the globe, taking part in awareness events to distribute life-saving information and increase awareness of the condition.
Links:
http://www.internationalencephalitisconsortium.org
http://worldencephalitisday.org
http://bdbrainwreck.com/2014/02/01/proud-to-support-world-encephalitis-day/
Videos