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PRESS RELEASES

FOR IMMEDIATE RELEASE
November 1, 2019
Contact: Becky Dennis / 214.912.6042 / becky@encephalitis411.org

Former Senator Kay Hagan Among 20,000 Americans Diagnosed Annually with Encephalitis
More Research, Awareness, and Treatment Needed for This Life-Altering Illness

PLANO, TX – Encephalitis411, a U.S. based 501(c)(3) nonprofit that aims to improve the quality of life for those impacted by encephalitis, sends condolences to the family of Former North Carolina Senator Kay Hagan. Hagan was diagnosed with encephalitis three years ago and had since continued to struggle with its complications.

“We are deeply saddened to learn about Hagan’s death, as we were getting reports of continued improvement from her family over the last three years,” said Becky Dennis, board president of Encephalitis411. “The complications from encephalitis put many families on a roller coaster of hope and fear on a day-to-day basis. Hagan’s sudden death was a real shock to us.”

An estimated 20,000 Americans are diagnosed with encephalitis each year from a variety of causes, including Powassan, the tick-borne illness that struck Hagan three years ago. Other causes include mosquito-borne illnesses such as Eastern Equine Encephalitis (EEE) and West Nile Virus (WNV). The Herpes Simplex Virus (HSV) (carried by 50% of American adults) can attack the brain, resulting in encephalitis. Enteroviruses, Varicella-Zoster (chickenpox) and auto-immune disorders are also frequent causes. And many causes are unknown. As the causes of encephalitis vary widely, the condition is extremely difficult to diagnose.

Encephalitis is swelling of the brain. While the brain is swollen, damage occurs — some are short-term, but in many cases the damage lasts a lifetime. Ongoing challenges range from memory issues and difficulty with motor functions, to headache and neuropathy, to complications with basic life-sustaining roles such as breathing and digesting. Some of those impacted will become comatose, and far too often, the outcome is death.

“The news about encephalitis comes and goes in the U.S. We’ve recently been hearing about neuro-invasive EEE in the Northeast and we continue to hear about WNV in many places across the country. But more often than not the stories focus on individual cases and not the overall lifelong burden of encephalitis that becomes the new reality for thousands of Americans and their families each year,” said Dennis.

“Senator Hagan’s family turned to Encephalitis411 and other resources for answers during her illness, but this is an under-served and under-studied illness that deserves more attention given its frequency. Because of the complexity of encephalitis, even seasoned physicians who have seen hundreds or even thousands of patients need more data to better treat this brain injury.”

“With 20,000 people diagnosed each year in the U.S., it’s really not as rare as people think. This should not be a ‘diagnose and adios’ type of illness given its wide range of effects on a patient’s brain,” said Dr. Arun Venkatesan, Director of the Johns Hopkins Encephalitis Center and an Associate Professor at the Johns Hopkins University School of Medicine, in the Department of Neurology, Division of Neuroimmunology and Neuroinfectious Diseases. Venkatesan also serves as a scientific advisor to Encephalitis411.org. Venkatesan goes on to say, “While imaging has improved in helping make a more accurate diagnosis, we have a long way to go in providing standardized treatment protocols based on how severely a patient is impacted.”

In a recent poll conducted by Encephalitis411 with 300+ respondents, only 21% of patients reported a quick diagnosis (less than 3 days). And in this same poll, only 28% reported a thorough treatment plan initiated by their physician, while others were left to navigate on their own.

“The overall cost of encephalitis is extremely high with more than $2 billion per year in acute hospital costs alone. This doesn’t include costs after patients are discharged,” said Dr. Carol Glaser, DVM, MD, a pediatric infectious disease physician and scientific advisor for Encephalitis411. “Patients and their families should have better options for improvement, rather than being left to navigate the illness and its aftermath themselves.”

A study conducted in 2012 concluded that more than 50% of encephalitis survivors are never able return to work, permanently impacting their financial livelihood. Adding in ongoing medical treatment costs to address the wide range of ongoing symptoms, their financial state becomes further exacerbated.

“What we’re missing is a medical discipline that focuses solely on encephalitis and its widespread impact on a patient’s overall health,” said Dennis. “Researchers focusing on Cerebral palsy, ALS or Cystic Fibrosis— all conditions that occur 3x less frequently than encephalitis – have done a tremendous job of studying these illnesses and training physicians who specialize in these disorders and can oversee the overall patient treatment. This comprehensive approach is completely absent with encephalitis where there are some experts, but not a united effort to treat the complete patient experience versus individual symptoms.”

Encephalitis can happen to anyone at any age, anytime, anywhere. As with Hagan’s tick bite, we are painfully aware that these are random exposures that can severely impact a life forever. And with the news of four other encephalitis-related deaths this week, our mission to raise awareness about this devastating brain disorder, in the medical community as well as the general public, is intensified.

Encephalitis411 states that “patients with encephalitis should no longer be told by healthcare professionals that ‘The worst part is over. All the best to you in your recovery.’ This happens far too often. We are working toward change in the encephalitis landscape in the United States.”

About Encephalitis411: We aim to improve the lives impacted by encephalitis through research, advocacy and awareness. We have a hotline that serves the U.S. population, we host meetings with medical professionals who speak and educate those impacted. We are backed by medical professionals who are deeply steeped in encephalitis diagnosis and treatment, who frequently speak at infectious disease and neurology events. We continue to provide resources, information, education, connections, and support to further increase awareness of this “invisible” illness. For more information visit www.Encephalitis411.org

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Media Contact:
Becky Dennis
214.912.6042
becky@encephalitis411.org



FOR IMMEDIATE RELEASE

January 21, 2019
Contact: Sunny Stephens / 615-478-1369 / sunny@encephalitis411.org

WORLD ENCEPHALITIS DAY TO BE MARKED IN DALLAS FEBRUARY 22ND
Series of events to raise awareness about encephalitis, a life-altering and sometimes fatal brain injury

DALLAS, TX – On Friday, February 22, survivors of encephalitis, their families and caregivers, along with some members of the medical community, will observe World Encephalitis Day. Encephalitis is a devastating brain injury that impacts more than 20,000 Americans and nearly half a million people around the globe each year, killing many, and leaving countless others with significant impairment. In Dallas, and around the world, the day is marked with educational webinars, survivor/caregiver meetings, and city skylines lit up in red.

Over the past decade, DFW has been hit hard by neuro-invasive West Nile virus, leaving an unprecedented epidemic mark on our community. It is estimated that in Dallas alone there are more than 1,500 individuals living with the aftermath of encephalitis (many as the result of neuro-invasive West Nile), including memory, mobility, speech, sleep and personality disorders, among others.

“Encephalitis411.org exists to improve the quality of life for those impacted by encephalitis, and Dallas is our focus this year,” said Becky Dennis, Board President and author of Amazon’s top-rated book, Brain Wreck. “On World Encephalitis Day, we raise awareness in several different ways in hopes of connecting with each of those local families impacted, and reaching even bigger audiences via our webcast learning series.”

A series of events will be held in the Dallas area to mark World Encephalitis Day here in the U.S. Details about these events can be found at https://encephalitis411.org/events.

  • Educational Webinars: Friday, February 22 – A series of webinars will be available for anyone to watch, across the country, focusing on different aspects of encephalitis, including experiences from caregivers, physicians, survivors and therapists. Learn about coping mechanisms based on their journeys, and learn about support services available for those impacted by this illness.
  • Buildings Lit in Red to Raise Awareness: Friday, February 22 – In conjunction with Encephalitis411, and other organizations worldwide, KPMG Plaza, Bank of America Plaza, and the Omni Hotel will light the Dallas skyline in red aiming to increase encephalitis awareness – highlighting the need for rapid diagnosis, and comprehensive treatment and rehabilitation protocols for those who survive, and honoring those who have died.
  • Material Handouts to Raise Awareness: Friday, February 22 – Students in the Health Sciences Department at National Park College in Hot Springs, Arkansas will be distributing brochures and various information about encephalitis, and inviting the public to sit in and watch the educational webinars.
  • Survivors/Caregivers Meeting: Saturday, February 23 – Attendees will meet fellow survivors and caregivers, and hear from clinicians about brain plasticity. Staff from Pate Rehabilitation and the Center for BrainHealth will join us in the Connection Room at the LifePoint Church at 4501 Hedgcoxe Road in Plano at 1:30 pm.

“There are many efforts we are undertaking to improve the diagnostics, treatment and rehabilitation for encephalitis patients,” said Dr. Arun Venkatesan, Encephalitis411 board, neurologist and Director of the Johns Hopkins Encephalitis Center. “We recognize the need for further research to improve outcomes in this important patient population.”

“The numerous causes leading to encephalitis, along with the wide range of recovery, adds to the mystery of this group of disorders,” said David Salisbury, Psy.D., ABPP, and Clinical Director at Pate Rehabilitation. “Our staff has assisted in addressing the rehabilitation needs for many patients and consistently find that earlier treatment proves more effective. Education about short-term and long-term treatment options for those with ongoing rehabilitation needs is a necessary first step to improve the quality of life for those who have experienced complications related to encephalitis.”

“As a survivor of this devastating illness and having met hundreds of other survivors and amazing physicians, I understand the severe impact encephalitis can have on individuals, families, friends, and society in general,” said Dennis. “My colleagues and I want to change the encephalitis landscape, and mark World Encephalitis Day with several events to help increase awareness.”

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About World Encephalitis Day (WED)
Initiated by the Encephalitis Society of the UK, this date is set aside each year to raise awareness of this brain disorder. Encephalitis411.org was founded as a U.S. based nonprofit, to also raise awareness, and to directly impact those who live in the U.S. Encephalitis411 encourages all survivors, caregivers, advocates, and medical professionals to wear RED on February 22nd, and to talk about encephalitis.

About Encephalitis411
Encephalitis411 has a 3-pronged mission of research, awareness and advocacy for those impacted by encephalitis. This U.S. based organization, backed by physicians across multiple disciplines at major institutions, seeks to increase awareness and advance research of this life-threatening, life-altering brain disorder. Encephalitis411 aims to advocate for those impacted by encephalitis, resulting in early diagnosis and best possible treatment outcomes.

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Contact: Sunny Stephens
Sunny@Encephalitis411.org
www.Encephalitis411.org
615-478-1369

 

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