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!
I continue to be helped by all of my interactions with the wonderful members of the Encephalitis Global community. Over the last year, I have taken enormous strides that would never have occurred without this group. Every week I learn something new that helps me with my own recovery, and I am encouraged to help others in this group. Kudos to Ingrid and Wendy for starting and running such a wonderful organization, and kudos for all of the participants for forming such a fantastic community.
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!