Wonderful I really appreciate your persistent and the way you overcome autoimmune encephalitis. Great journey.

i'm 16, and i've known i wanted to go into healthcare for a while, but have recently been exploring different fields to see what i am passionate about, and this video has helped me see i want to become a neuropsychiatrist. thank you!!

my brother suffering from AE it’s been six months still seizures coming he has given plasma exchange ivig retuximab also.

Thank you so much for this podcast. I can't believe I'm hearing these stories 30 years after I had Encephalitis. I did search a few years back for survivors of Encephalitis but had no luck, I suppose I didn't dig deep enough. But heyyyy I found you guys at last😊. Thank you again 💓 💖 💗

I didn't hear anything about diet with this disease. I think it plays a big role and it should be a big part of treatment. There are many foods that can exacerbate this illness. Just wondering if anyone out there has any input. Thanks!

I have just recovered from Auto immune Encephalitis, and left with epilepsy, i would be happy to share my story if your page wanted another,

Dear sir My baby is 4.5 years old and has been diagnosed with NMDA receptor encephalitis. She has been undergoing treatment for the past three months but is still not responding and remains unconscious Involuntary movements still have. Could you please advise me on how long it might take for her to recover? 😔

Very good explanation. My friend was diagnosed with LGI1 after three months of memory loss, fb seizures, change in personality and several falls. He received steroid and IVIG treatments which has helped. It will be two years in March of when his symptoms first appeared. He finally returned home two weeks ago after being hospitalized for a few weeks, living with family members for eight weeks and the rest of the time in an adult community living situation. He has memory loss and the experience has aged him harshly. He was 70 at diagnosis.

I'm sorry this happened to you. My daughter was diagnosed with Encephalitis in 2014, from lyme disease. She was 18 at the time, spent 2 mos. in John Hopkins, was treated and took about 6 mos to a year to recover after IV antibiotics therapy, scariest thing we ever endured. This reminds me of our daughter I'm so glad your doing good!! My daughter had phenomenal neurologists at Hopkins but almost didn't make it, they saved her life God was so good to us! I thank him all the time! Encephalitis is terrible. Best wishes to u and your future!

I totally agree. Well done, Ava and everyone at Encephalitis International! 👏👏👏 I donated what I could afford.

Hello everyone, AE survivor 2024 ❤

Graças a Deus que a eventos assim porque se pode tirar informações e forcas para continuar a lutar contra essa doença que pode destruir ou aproximar familias Graças a Deus

hello everyone ❤

I've had a suspected form of autoimmune encephalitis that seems to relapse and remit. It was diagnosed 12 years ago but insurance denied both the testing and IVIG therapy because I'm an adult and it is not "acute." I have no idea where to even find a doctor who is willing to test and treat for this in adults. :(

Hello is there anyone that i can contact and talk to about this disease? Im struggling and am in dire need of help. In Oklahoma where doctors seem to be uninformed on this disease.

Thank you , For sharing your story.

Hi Daniel, I had Herpes Simplex Encephalitis the day after my first birthday. Growing up following encephalitis was extremely difficult for me, too. In the sense that I didn't know I was wrong when I was growing up, but regarding social skills. I'm so sorry that you have been through 'similar'. As you say, "That's just the way I am. My mum was more understanding than my dad. I completely understand how it was for you and your parents. My mum sadly passed away 6 years ago next month. My parents couldn't get their heads around why I was different from other children. I also suffered with anger and other mental health issues. Thank you so so much, Daniel, for sharing your story.

I just recovered from Auto immune Encephalitis, I'm in Boston atm, my wonderful wife is helping me get through it all, it's, life stealing, in a way, they say time is our most precious gift, and this condition, it, it steals that, I didn't even know that I was married when I woke up in the hospital 😢

hello! good day to everyone! watching from Philippines

I haved encefalitis and ADEM.

Has it ever been seen that this disease recedes without intervention?

Thank you Susanna for putting your story out there for all of us survivors!!!

Thank you

Hell I got it from when I was working at HomeDepot and I fell the bar that holds in the lumber went from the bottom of my back to the middle. I was in a coma for 2months and almost died twice. I had to learn how to read write walk and talk all over again.

Hi my dad was hospitalized two months ago and was on Acyclovre. He struggles with his short term memory. Is anyone in this group over 70years old. I need to understand how the recovery will be and how old people should be treated.

Nice doctor

Its not easy to see her suffering from this kind of ill

Hi,my daughter has autoimmune encephalitis😢

Thank you!

My daughter is in ICU right now with encephalitis and meningitis 😡😢… she went in on October 23rd and told she had viral meningitis … 5 days later no relief and she started having secondary conversation as if she was at work…heart rate went up, transferred to another floor and ended up in ICU on life support😡😡😡… numerous test done and 3 spinal taps😡😡…. STILL INCONCLUSIVE RESULTS! Then an ultrasound of her ovaries done and found a dermoyd cyst and said that was the culprit… the cyst, ovary and fallopian tube was removed and nothing has changed😢😢😢…she has her high days and low days…PRAISE GOD FOR HER SMALL VICTORIES…. I just want baby home.. she’s 28😢😢😢😢

My daughter is in ICU right now with encephalitis and meningitis 😡😢… she went in on October 23rd and told she had viral meningitis … 5 days later no relief and she started having secondary conversation as if she was at work…heart rate went up, transferred to another floor and ended up in ICU on life support😡😡😡… numerous test done and 3 spinal taps😡😡…. STILL INCONCLUSIVE RESULTS! Then an ultrasound of her ovaries done and found a dermoyd cyst and said that what was or could be the culprit….. 7 days later… SHE IS STILL HAVING this EXCRUIATING HEADACHES😡😡😡….. 😭😭😭😭

Olá meu nome é maria José e sou mãe do meu filho que em 2021sofreu uma encefalite muito grave que levou a ataques epilépticos refratarios muito graves toda a familia sofreu muito ,mas tivemos muito suporte da familia e proficionais muito presença meu filho 2 anos depois ainda está com terapias e ficou com 80 %de encapacidade hoje tem 25 anos e nesta idade o sentido de liberdade é muito focado e com muita terapia dele e tambem minha ,porque fiquei com ele a ajudar nas tarefas mais simples posso dizer que esta situação nos afectam todos os dias porque queremos velo mais independente e feliz revi muitas coisas que foi dito no testemunho da hannah mando toda a força do universo para que tudo corra bem ❤

I worked with Jim for six years. (Hi, Jim!). When he was hospitalized, a few of us from work went to visit him. Upon our arrival, he could barely speak, and what he did say was often unclear. At times, you could catch glimpses of the abstract ideas he was trying to convey, but it was challenging to follow. I was genuinely worried that his brain might not recover. I had heard of his condition but had never encountered anyone affected by it before. Jim was brilliant at his job and an excellent speaker, and the daily responsibilities we shared required us to always be on our game. Clear and precise analytical thinking is essential in our work. After watching this video, it seems his ability to engage in intellectual conversation and make it interesting has returned-at least to the point where a stranger wouldn’t recognize him as a victim of a debilitating brain disease. I know he faced challenges while making this video, but it’s remarkable to see how far he has come since our last visit to the hospital. While luck, skilled doctors, and perhaps divine intervention likely played a role in his recovery, I believe his character and determination have been the most significant factors. I suspect not everyone is as fortunate or possesses the same resolve to pursue their healing. Accepting Jim's retirement was tough for me, especially because his departure was abrupt due to his illness. Our plans had to change drastically, and I still feel the impact of his absence today. I wish Jim all the best and hope he reaches a level of recovery that brings him comfort so he can fully enjoy life. He mentioned that his personality changed, but I can see the old Jim shining through once again. It’s understandable for someone to undergo such a transformation after a traumatic event. Knowing Jim personally, I’m aware that he has faced several life-changing challenges in the past that could have defeated a lesser man. His determination to move forward continues to humble me. I wish him and his family all the best. Fantastic video by the way!

I have it, and MR give a wrong diagnoses! Brain tumor what i never have.

I had almost die to this back in 2018.

I can’t believe you are able to control your emotions while speaking professionally.

God Bless you 🙏🕊

Thank you so much for sharing your experience. Enjoy life!

Wow I believe o have this but not diagnosed yet, it's been a hard long 50 yrs.

I had thyroid cancer, i had infections, maybe im dealing with diskitis, which im going to a biópsy now, i had HSV genital which might have ellicited an immune response that drove demyelination (adem ) plus that suffered that from benzodiazepines withdrawal and its "syndromes" with all that, i couldnt get credit, i didnt found s doct willing to diagnose and screen properly for that matter, úntil today 3 more years later i have no diagnosis, i have nothing on paper screened and diagnosed which would open doors for IVG or other treatments aiming for some sort of improovement on pain, nerve damages and spinal involvement, but nothing, not even a diagnosis and proper screening, out health care is like that, you will bê offered venlafaxine and risperidal for encephalitis.

Daniel Starr

Hi my name is Kelli and I got viral encephalitis back in 2003. It changed my whole life. I was married to a man I loved more than anything had a house a job of 16 years that I enjoyed and I adored my family life. When I started feeling ill I couldn’t quite explain what was wrong but when I knew I was sick my doctor did a spinal tap and there it was. I went into the hospital that night and I don’t remember what happened next. I was told my brain had swelled to my skull and and if I hadn’t been admitted to the hospital when I was I would have died. Well, a long course of steroids and antibiotics and hospital stays and rehabs and re learning everything I had ever known, I am living today. It has been TOUGH road. You are certainly right, there is not much information out there about this disease you called it, I’ve been used to referring to it as a brain infection because that how they had explained it to me. They told me it was sister to the West Nile Virus, the mosquito virus that had killed so many people. People that didn’t know me before might not be able to tell anything had happened to me but in my head I sure can. I lose my words, my balances is off, apart from many other things although I have come a very long way after a lot of time and a lot of rehab but I will always have residuals and my brain will never completely heal.

How are you now?

Just how rare is it exactly if it isn’t routinely tested for amongst psychiatric patients? You can’t really put a bottom number on the denominator of it. How many do you test that do not have it. I think it may have an incidence rate about half to a fifth of all treatment resistant schizofrenias.

Thank you for sharing. My daughter is currently in the Neuro-icu struggling. She has had many treatments still not aware yet. There is some glimmer and good changes. I am hopeful. I like that you reflect back as well as use art and music. You have come a long way. I look forward to my daughter returning as you have.

My brother is suffering autoimmune encephalitis since three months he getting seizures since three months please help even after lot medication also no much improvement he still on bed no movement. Getting continue seizures.