Encephalitis Global

My daughters is diagnosed as ANEC(Acute Nectrozing encephalitis child) patient five months ago. Do anyone have experienced this diseases or information about it, Please share some information for help us for her recovery fast. She is one and half year old. .

My sister became critically ill with HSV1 Encephalitis February 16, 2017, followed by Anti-NMDA-r Encephalitis. These viruses are going to become more prevalent-to-epidemic, despite its now one-in-a-million stated status. Pat spent 41 years as an R.N., mostly night shifts and Emergency Room. At 63 years old, I find this a cruel end to her career as a very helpful, knowledgeable Nurse. I researched these two types of Encephalitis' extensively for days on end, and there is literally NOTHING out there on Encephalitis as a whole, which I find extraordinarily cruel and negligent on the entire Medical Community of Doctors. I did, however, find Encephalitis Global, which in many ways was the "life-saver" I needed in my understanding of my sister's illness. What I find MOST disturbing is there are NO facilities for short-term or long-term rehabilitation for the myriad of behaviors exhibited by those who have suffered from these illnesses. It's a complicated illness that leaves the person impaired drastically, often with acquired brain injuries. These injuries can lead to behaviors that are neuro-psych, yet even then, I have yet to see/hear of a comprehensive endocrinology work up being done. When damaged parts of the brain no longer "make" the brain chemicals necessary for behaviors that challenge survivors, that erupt from the damaged part of the brain, one would THINK the Medical Community would look to what can be done to address the endless abyss of depression, anger, impulsiveness, aggression, worry and hysteria, all which impede the healing of the brain's neuroplasticity. During these dark nights of the soul that I have experienced, Encephalitis Global and the forum have been very kind, understanding and has provided so much information that is completely unavailable any place else. Through the experiences of others, I have become very aware of the many challenges facing my sister. Daily my sister talks of suicide, to the point where it's gruesome to endure, to include pantomimes of slitting her throat and driving a "knife in to the right ventricle" of her heart. She is fixated on death, on who is dead, how they died etc. I took care of her for a bit over a month, and it impacted my own health. Yet during that time, we had some great progress from time to time. Then it would seem to disappear. All the while, I found much understanding of this very complex illness through Encephalitis Global. I have a friend whose son now has HSV Encephalitis (as I said, it is becoming epidemic) after experiencing a Traumatic Brain Injury. I will most certainly recommend Encephalitis Global to his family, who of course, are devastated at this 30 something year old's condition. What I find most reprehensible is that from what I have gathered in information, it seems like the Anti-NMDA-r Encephalitis DOES show in the Lumbar Puncture diagnoses IF and WHEN a follow up Lumbar Puncture is performed after the 21 or more days of IV Acyclovir, however, in the USA, it is not "protocol" to do a follow up Lumbar Puncture. Then what happens is in approximately 3 months afterwards, a "relapse" occurs of symptoms, and more damage is done because of this failed protocol. It IS, however the protocol in the United Kingdom to perform the follow up protocol. Encephalitis Global is the best resource I've found on these Encephalitis illnesses. Wendy is amazing and has video on You Tube, which I find hope for the possibility of ongoing recovery from the devastating consequences of this illness. We do need to address the issues, globally, for Rehabilitation Facilities for these people, in a gentle and humane way, to enable their "new normal" and continue forward. Thank you Wendy and the others who have helped me to cope with helping my sister to the best of my ability.

My mum got Encephalitis almost 3 years ago. It has been truly amazing to be able to read so many people's experiences, issues, concerns, and joyful achievements from Encephalitis Global. People are so giving of their time and experiences. It has truly helped to understand how debilitating (and worse) Encephalitis is, but also that there is a lot of hope and potential for recovery for a lot of E people too. Thank you for reaching out to so many people.

Eight years ago, I was almost done with law school when I suddenly became ill with encephalitis, and literally fell into a coma. Nearly a year later, I finished law school. I began my true recovery at that point, and much of that recovery has been through my interactions with my friends -- my family -- from Encephalitis Global.

At the end of this month, I am taking the NY bar examination. I would not be doing this without the wonderful interactions with those in this organization. They are the ones that help me through all my struggles, and they are the ones that have led me to understand exactly how to deal with my changed world.

When you feel like you are all alone...when this horrible hidden illness creeps into your loved one's mind and body and you spend months seeking answers....this is the reaity of encephalitis. Encephalitis Global gives help and answers and peace. Thank you for being there for me...a caregiver of someone who has autoimmune limbic encephalitis.

When I developed encephalitis in 2013, the dramatic effects on my speech, my short term memory and my ability to work were completely devastating. One of the main problems was the I looked physically 'normal', even though I had lost my ability to function independently . And the long journey to recovery was not easy; it was a roller coaster ride with many ups and downs, particularly for the first two years . Joining Encephalitis Global in 2015 was an uplifting experience, as I realised that I was no longer alone in my struggle. Other victims of this illness are with me on this journey , and we can share ways of how to deal with it. For me, Encephalitis Global is priceless.

Encephalitis Global has provided non stop support for my grandson. Encephalitis Global has provided Rueben with the opportunity to speak to others about his story and be involved in raising awareness.

I have met great people-caregivers & survivors at the conferences and learned so much.

Keep going strong!

I am writing for my son who contracted viral encephalitis in 2013. We had heard of encephalitis but knew relatively little about it. Doctors could not answer our questions as they have had little experience with it, if at all. Researching it via Google led us to Encephalitis Global and a network of people who had experience with this disease. We found clients/caregivers with similar situations/experiences and were able to give us suggestions but most importantly HOPE! Since then, we have attended 2 of their conferences reaping a wealth of knowledge, understanding but most importantly friendship with similar people who suffer from this disease.

I came ill in 2009 with viral HSV Meningo Encephalitis. After 3 weeks in the hospital and then home with a pic line and home health nurse for another month I was completely lost, shattered and broken trying to make sense of what had happened to me. I felt like I was trying to pick up pieces of my brain and make them fit together and be whole again. Even though I was treated initially very quickly with antiviral IV as well as anti seizure drugs and IV steroids to reduce the swelling in my brain, I had no one really telling me or my family what exactly might happen to me long term. Well, I can tell you. I went into a deep depression. I felt completely separated from my own brain. I then found Inspire and Encephalitis Global. I'm not sure what my long term outcome would have been without all of the kind uplifting support that I received from people around the world who understood everything I had been going through for 2 years on my own. It's like I found a whole new family of supporters. I have made some great friends and I know that without the support from them I would not have been able to keep pushing forward and reaching out of my own comfort zone dealing with an acquired brain injury. We as a group are all honest about our struggles. It is so comforting to know that we truly are not alone fighting everyday to find ways to deal with the residuals that accompany this horrible condition.

My mother had herpes simplex encephalitis a year ago. She lives in Poland and this is a rare disease. Therefore, it was difficult for me to find much of information about recovery in Polish language. Doctors didn't give as much hope or any instruction what to do next after discharge from a hospital. Thankfully, I found Encephalitis Global community online. They provided me with useful information about the encephalitis disease and gave me much needed hope that life after E is possible. Thank you, Encephalitis Global !

I suffered encephalitis and during my recovery, it was bewildering, frustrating and lonely to try to understand what my path forward was. Unlike external TBIs where there may be a gaping head wound, encephalitis is a "hidden" brain injury. My medical team kept assuring me that things would get better and all would be fine. It is such a rare condition that I am not sure that many neurologists really have a sense of how devastating it can be and the far-reaching effects of it. I felt so alone and "unheard" by my medical team so it was a godsend to stumble across Encephalitis Global and find a community of people who knew what I was going through and could offer tips and support.

They provided a much needed source of encouragement,inspiration,information and the biggest Heart around compassionately reaching out to our utmost timely needs. At times,the prayer-answered Lighthouse for our Darkest Days.
THANK YOU Encephalitis Global.

I survived the initial impact of E in the fall of 2012.
Upon discharge from the hospital, I was expected to resume all aspects of my old life with everyone saying "your cured now the illness has gone!" and was expected to be the old me again....like having a bout of flu and being administered the required dose of hot broth, some bed rest and remedies.
Although incapacitated and direly confused I began researching for information of what the professionals had later registered as my ailment.
I came upon Encephalitis Global and it has been my saving grace.
It's nice to know we are never alone and we have help and advice from others who have experienced the variance of highs and lows recovering from the many facets of damage done by this rare unexplained illness.
Thank you all and especially Wendy for being the shining light in our road of darkness.

Encephalitis Global was there for me in my darkest hour. They were there encouraging me as I recovered and the bonds that I have formed with other survivors are life long.

I got herpessimplex encephilitis in 2011, for the first year i didn';t much go on the computer but once i was up to it i discovered this global network and it has been a life line on so many occasions. words can't express how much i value the kinship i have felt with all the wonderful people who interact on this site. i have made such wonderful connections with people all around the world, people who really understand how it is to deal with the after effects of encephilitis, the highs , the lows and everything in between. Whenever i have something i am struggling with i can put it out there to the group and get helpful replies from others who have been there. To know we are not alone with this is so valuable, especially as many people out in the world have no idea about how it is to live with brain injury.
It also is very fulfilling to know that i to can help others through this network which helps me to feel i have something to offer even tho i have lost my career and life as i once knew it. slowly but surely i am building a new life and the support i have got from E global plays a huge role in that. I can't imagine how life would have been the past few years without this network.

As a survivor of encephalitis I value so much the friendship, support, information and encouragement that Encephalitis Global provided to me especially during my early stages of recovery. As a volunteer run organisation Encephalitis Global is up there with the best of them!! And even though I'm on the other side of the world I never feel alone in my journey with encephalitis.

I have rated Encephalitis Global twice before. I am happy to say that I continue to be helped by this wonderful organization of caring individuals from around the world. Without these interactions, I would not have come as far as I have: I have grown tremendously. Thank you, members!

My daughter was diagnosed with Anti-NMDA Receptor Encephalitis in 2014. I posted her story on this site and asked for help. A parent replied and gave me the contact information for the neurologist who was instrumental in her treatment and recovery. I am thankful for this site and review it often for encouragement and support.

I am thankful for Encephalitis Global. After my life changed drastically in March 1996, I felt no one could relate. But meeting my new friends and hearing their stories, I felt like I had met a new family. Thank you!

I was born and raised in New Orleans, Louisiana except when I lived in Athens, Georgia for 7 1/2 years and for 5 1/2 years, I worked for Bryndis Roberts, Vice President for Legal Affairs. She had two girls, Jennifer and Jessica, who went to grammar school. When we had to work late, I would pick her girls up from their after school program and take them to their Girl Scout meetings and other activities. At work, I was responsible for providing information requested during lawsuits against the University of Georgia and for providing records to those that request access under Open Records Law.

When I moved back to New Orleans, I decided to buy a double home in July 1995. I rented out one side and I lived on the other. It was a long old shotgun home with only one closet on each side. It was a great home that was destroyed by Hurricane Katrina because my entire neighborhood was under water for three months. When I was finally able to see it, the majority of my belongings were destroyed . . . All clothes, photos, books, bed, sofa, computer, CD's, etc. were gone. I had to hold my breath when I walked in because the smell would make me sick. When I went in, I was only able to grab my ticket to see Paul McCartney in Las Vegas (in November) that, thankfully, was not destroyed on the top of my computer stand, and the dishes that were stored up high in the kitchen. Everything else in my home was lost.

Bryndis had a great influence in my working life because I had grown into a hard-working Paralegal. For instance, I had worked for Allan Kanner and Associates for 5 years and traveled to New Jersey to find the documents to assist in our litigation. I was responsible for handling all communications for those that signed up and received funds from our completion of the case1 . I then moved on to work in other Law Firms, and I was working for the Law Office of Barrasso Usdin Kupperman Freeman and Sarver when Hurricane Katrina destroyed my home and for 2 years, I lived in River Ridge, LA and I drove to work in downtown New Orleans. My new home is a 3 bedroom/2 bathroom home that is raised up with storage and parking for vehicle downstairs. However, when we had to leave town because Hurricane Gustav was coming, I drove to Atlanta, Georgia with my 4 dogs to stay with my friend and former boss, Bryndis. Those were the good old days.

My hard working days as a Paralegal were destroyed in 2009, when I was diagnosed with Herpes Simpler Encephalitis and 3 cm of my brain was removed. "Encephalitis is an inflammation of the brain often caused by viral infection. Patients require urgent care due to rapid development of fever, headache, seizures, and neurological issues. The rare disease can be fatal.” (Wendy Station and Ingrid Guerci. "I’m Not the Me I Remember: Fighting Encephalitis." http://www.inspire.com/.)2

I am thankful that my Mom, Helen Locantro, and two sisters, Lynne and Donna, helped me throughout my serious illness and recovery. The worst part of that illness is that I lost memory of my previous life. I was depressed and did not do well in school. Then my body literally shut down again. I couldn't walk or go to the bathroom; It was terrible. I also kept having seizures and had to go to the hospital. Finally, in April 2013, I had brain surgery and they fixed what was broken! I’m back to thinking appropriately!

I have been attending speech therapy at LSUHSC Speech-Language Pathology clinic for many years. My class is run by Scott S. Rubin, Ph.D. I have regained some knowledge that was lost and still go to school to relearn many things that were lost. My teacher last semester was able to help me relearn the streets I travel on in Uptown New Orleans. I was so happy when while I was on Jena Street on my way back from Rouse's grocery store, a car stopped and asked for directions to get to Touro Hospital. I smiled and told them directions and they both thanked me and drove off. I was happy because I was FINALLY able to help others because of what LSUHSC Speech-Language Pathology has done for me!!!

Unquestionably, I want you to know that my neighborhood is, and always was, wonderful . . . On my side of Napoleon Avenue, it is in good condition because the neutral ground now has a walkway in the middle of the street that you can walk up and down; it also has trees and garbage cans. Many people walk or ride bicycles/tricycles on the path and everyone truly enjoys it. Walgreens is on the opposite side of South Claiborne Avenue and CVS is on my side. Since I no longer drive a car, it is truly a great neighborhood to live in.

1: (Janes v. CIBA-GEIGY Corp.[$20 million settlement on behalf of property owner class affected by the seepage of volatile organic compounds from chemical wastes stored on the property in Toms River Township, New Jersey.], No. L-1669-01 Mass Tort 248 (Law Dix. Middlesex Cty., NJ).
2: Station, Wendy, and Ingrid Guerci. "I’m Not the Me I Remember: Fighting Encephalitis." http://www.inspire.com/

As a survivor of West Nile Virus with Encephalitis I have found Encephalitis Global to be very helpful in moving beyond my brain injury and nuerological complications.
In 2012 i was infected in MN. After I survived the coma and was able to leave the hospital a month later I was trying to get back to normal without much of a support team since my insurance benefits had maxxed out. When my battle to return to full time work had failed and my primary doctor saw my quality of life deteriorating, he referred me to get some help for my needs. The state unemployment office vocational rehabilitation office also encouraged me to find assistance. I started on a winding mystery journey. When I consulted the MN Brain Injury Alliance in order to navigate the web of services they directed me to encephalitis global online support group. This group has provided me a great connection with other folks who are fight for a better future. i gaained her a broader perspective of the battle i was in, as well as how to see a brighter potential future. Eahc of our experiences is unique and yet we feel a part of a community. My dark days are less dark because I lean on and learn from my sister and brother survivors and our awesome caregivers who share on the site. My good days are brighter because I also have the opportunity to share my insights and triumphs. Thank you Encephalitis Global. Encephalitis will not win. We fight together.

I'm a survivor of Herpes simplex encephalitis. I was hospitalized in Oct of 04. I was released after 10 days with no instructions just seizure meds. I found this site 10 years later in a desperate state trying to find out what's normal. I found much more. I now know my symptoms are very common, and I have gained a tremendous amount of insight as to what are my triggers etc. this is a much needed site and I can't thank you enough for hosting it!

When my adult daughter was diagnosed with limbic encephalitis, I had no idea what it was or what the long-term implications were. Her doctors were not direct about what her needs would be post discharge. While she was still hospitalized I spent some time surfing the Net and found very little information about this disease, it's impact on one's life, or the long-term prospects. In short, it was very frightening. When I finally came across the Encephalitis Global site, it was a gold mine of information. Reading the stories of so many survivors and caregivers helped me understand what was ahead and that we would not be alone on our journey. Thank you Wendy and Ingrid for starting Encephalitis Global and helping us to know what we might expect. Without this site, I would definitely have been in panic mode while stumbling around in the dark. With the information provided by other survivors and caregivers, I immediately began the process of applying for disability and financial assistance, which allowed my daughter to get the services and assistance she needed quite quickly. And it continues to be the place I go while trying to better understand what my daughter is experiencing and how I can help her.

Post Encephalitis and 2 years of "radiosilence" i finally realized that i wasnt alone. An incredible valuable ressource of experience and information suddenly occured by visiting inspire.com FB group and the website of Encephalitis global. This has so much importance while getting your new self together after illness.

I am a survivor of herpes simplex encephalitis which I got in December of 1995. I was out of work for over three months but when I got back, because of who I worked for, I was allowed access to the internet. The first thing I looked up was encephalitis and found a support group run by Debra Caires for the National Encephalitis Foundation which no longer exists. I manually took over receiving/copying/pasting all emails and then when Yahoo offered free 'groups' I signed up and all of the few members joined as well. Wendy Station, also a survivor, contacted me and we became a nonprofit organization, Encephalitis Global, Inc. (www.encephalitisglobal.org). That was about 10+ years ago. Since then, our support group is online through Inspire and we have almost 2000 members worldwide. Enncephalitis is a very rare illness and most doctors have never seen a case so when you as a question about the residuals, they don't really have an answer. Our members are survivors and their caregivers. We ask questions and give advice and let our members know we aren't doctors but a support group. Our group is very active and we have over 200 messages per week.

I am a survivor of encephalitis, and without the support and encouragement I receive from communicating with other members of Encephalitis Global, my quality of life would be far lower. Being able to go to the forum and "speak" with others who face the same life challenges I do reduces my sense of isolation, and the online forum is a never-ending source of hope, inspiration and coping strategies. The group has had a life-changing impact on me.

I joined Encephalitis Global in February 2011. Ten months prior I was in a coma and had been diagnosed with Meningoencephalitis. This illness left me with memory problems, speech problems, problems walking, weakness down my left side, constant nausea and vertigo and severe fatigue. Returning to functionality has been hugely challenging and, for the most part, lonely. No one around me knew anyone who had survived Encephalitis.

Then my wife and I discovered Encephalitis Global. It was like a homecoming! Suddenly there were 1,000+ people who knew what I was going through as a patient, and what my wife was going through as a caregiver. The comaraderie has been immensely strengthening and encouraging. I don't know what we would do without E Global!

Thank you Wendy and Ingrid for your perseverence for the past 10 years. It has paid off in my life... and in the lives of countless others.

We are a support group for survivors of all types of encephalitis, their caregivers, families and friends. We discuss what the residuals of encephalitis are and how to function. Most of us have severe headaches everyday, memory loss, are tired, can't function. Many of us were unable to go back to work and live on disability.

We are a worldwide organization and, for those interested in attending, we will be having a 3-day conference in November (see our website for details).

I can't remember how I stumbled on to inspire.com, but since I got sick with encephalitis, this site has been a lifeline for me; when I feel I can't go on, I log on and I'm encouraged by people living through what I'm going through and by people further down the recovery road
and I often find posts which help me explain to those on the outside what it's like being this new me

As a member of the encephalitis society in the United Kingdom which has a highly structured professional manageagment team of the highest order and proessional expertise ie regarding research into the what causes encephalitis etc.
As a member of ncephalitis globalI have gained a lot from social interaction with other survivors. Having some minimal experience in community development what encephalitis Global needs is a person who has the ability to what is termed as MBA or Cheif Executive Officer ability like they have at Goodwill in various parts of the United States. Encephalitis (infamation of the brain ) With regards to Wendy and Ingrid they are amazing to achieve wt they have had don so far. To move on they need to develop a business plan because this is needed to obtain funds etc. Encephalitis Global needs so much help because they have such tremendous potential With the recession The Rt Hon David Cameron Prime Minister of the UK speaks about the greater society and with proposed greater co-operation between both oour nations voluntary organisations will need to take more responsibility, and in order to do this Encephalitis Global needs all he help with regards to capacity bulding under the guidence of a Business expert or professional consultant. In essence wit nearly 400 members and growing, this organisation needs to b recognised and aided. As a non US resident the encephalitis societ speaks very highly of them, but have advised me along the lines o capacity building help.

this has helped me in so many ways i felt so alone and now with this group my fear of being the only one and having noone to talk to is finally gone.

Encephalitis Global, Inc. provides an excellent source for survivors of encephalitis, caregivers and family members. Encephalitis, recovery and rehabilitation can be mysterious, puzzling and extremely stressful for all involved. Whether the formal diagnosis is viral, bacterial or a resulting condition from head and brain injuries, the Encephalitis Global, Inc. forum is a place for survivors and caregivers to gather and share experiences and suggestions. Common residual deficits, both cognitive and physical, are easier to understand and cope with when information is shared among survivors and other caregivers. The founders of Encephalitis Global, Inc., Wendy and Ingrid, are both survivors of Encephalitis. They have provided online access to a safe and nurturing environment.

Hi. I love this site. I was diagnosed with steroid response encephalitis in 2007 and when I learned about this site, it was a welcome community for support and inspiration. More needs to be done to inform others about this illness and this nonprofit site is just one step on the path to doing so. Thank you Encephalitis Global Inc. for your work and for creating an online community of members who truly inspire others. Best, Mary Napoli

When I had encephalitis in 1999, it was near to impossible for my family to find helpful information. Some professional medical information could be found, but it was impossible for non-professionals to decipher.

This is the most valuable and unknown charity in the world. It has helped thousands of people by the labor of two very special people primarily and it now has incredible room for developing into a nationally recognized household name charity that will continue to not only help thousands--but millions of people internationally. I have benefited incredibly by its valuable web-based resource and look forward to see its growth over the next ten years.

I WANT TO THANK THIS ORGANIZATION FOR GIVING US A PLACE TO WRITE OUR STORIES AND GET REPLIES FROM OTHER MEMBERS. IT IS A PLACE THAT WE CAN EXPRESS OUR FEELINGS TO OTHERS THAT SEEM TO UNDERSTAND AS THEY TOO HAVE BEEN TOUCHED BY THIS DISEASE. IT IS SO WONDERFUL THAT THERE IS A ORGANIZATION LIKE THIS AS THIS DISEASE CONTINUES TO BE SO MISDIAGNOSED PERHAPS SOMEDAY WE WILL HAVE BETTER HEALTH CARE PROVIDERS WHO ARE BETTER EDUCATED ON THIS DISEASE AND THE MORTALITY RATE WILL LOWER

I found this site shortly after I got out of the hospital. I had never heard of encephalitis before. This group of wonderful people, caregivers, family members, friends and survivors of this debilating virus has been so chock full of information. Knowing there are people who fully understand me is refreshing.

I have been to this site since their inception. It is a excellent resource for people who have been or a loved one who has been effected by this disease. It also is a great site to find others that have been affected.

After the doctor who has treated people who have had their brain infected with encephalitis told me that I was his first patient to survive this infection in twenty-fours of treating about two cases every three years, I understood why he did not know much about a survivors experience. Encephalitis Global allowed me to see that I was actually doing much better than most of the others who were fortunate enough to survive this rare disease. Just knowing how fortunate I was allowed me to quit being the painful bitching survivor that was driving his wife crazy.