Encephalitis International
Encephalitis International
Encephalitis is inflammation of the brain caused by infection (usually viral) or by autoimmune disease. Encephalitis is indiscriminate, striking adults and children alike, showing no respect for age, gender, ethnicity or culture. Mortality rates are high and many of those who survive are left with an acquired brain injury, the degree and severity of which will vary.
Encephalitis International is a registered non-profit organisation and the only resource of its kind in the world. We provide direct support and information to people affected by encephalitis around the world.
No matter where you live in the world, we are here to help. Get in touch by visiting our website at www.encephalitis.info
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Very important topic, thanks encephalitis society.
Thank you for posting your story.
My aunt just passed away she was 75 she had it since she was 8 she was a good aunt RIP aunt Kathy.
Hi, we have a support group for people who have suffered bereavement as a result of encephalitis if ever you wanted to talk to others about it www.encephalitis.info/online-support-meetings/
Unfortunately sometimes no possible way to diagnose this condition! :( Since 3rd of may I have worsening symptoms of encephalitis. Every week came out something different symptoms. I even came home to Hungary here I have more symptoms. Last 4 weeks developed crazy pain in my ovary comes and go. I had MRI I had Ct scan I had blood test I had abdominal mri. The only thing I did not have is a lumbar puncture.:( I have mixed symptoms neurologically every day different things and there is no way to convince the doctors to do a lumbar puncture.:( I live in London and there is no hope no help seriously I went everywhere.
Hi, I am so sorry to hear of your experience. If you would like to talk to anyone about support please email [email protected] or call our helpline +44(0)1653 699599
Thanks, Encephalitis International for excellent and very informative stories
Μας τα μπερδεύεις από την μέση και μετά
I suffered in 2000 today I have no smell taste sleep only 3 hours per night medication lot's of it .thanks for your speech.
Hi Maria, I am sorry to hear about your experience with encephalitis. We have a support line and email if ever you would like to reach out. +44(0)1653 699599 [email protected]
Given the sensitive nature of this discussion, can you provide insights on how families and friends can cope with the emotional impact of losing a loved one to encephalitis?
Hi, thank you for your question. We have resources and support that can be accessed on a variety of levels. For instance, we have a page on our website with downloadable resources if someone wants to read about how to help others who are dealing with bereavement www.encephalitis.info/effects-of-encephalitis/death-from-encephalitis There is also our support line and email service for anyone who wants information. And we provide a place to talk to others through a specific online support group dedicated to those who have experienced death of a loved one from encephalitis www.encephalitis.info/online-support-meetings/ Our team receive specific training on helping people with loss and bereavement. If there is anything we can do to support you, please do get in touch +44(0)1653 699599 [email protected]
@@encephalitisinternational Thx
Bless you for sharing, I am sick with Shingles and a bit foggy and just off I hope I escape that! Keep going 💯🙏🤗
Hi, sorry to hear about your experience. We have a support line if you would like to talk to anyone about encephalitis.
I’d love to connect with you! My husband had the exact same diagnosis, also from enterovirus. We are navigating a similar recovery now. Continued best wishes to you!
I was struggling for 2 years maybe more before being diagnosed with this, thankfully on the right treatment now.
Hi, I am sorry to hear about your experience. We have a helpline, if you would like support for anything. To get in touch, call +44(0)1653 699599.
My brother got mengiococcal encephalitis at age 17 in 1999. I found it really interesting you acknowledging those that die in the subsequent years due to the damage caused by encephalitis. My brother was left unable to walk / talk and also some damage to his kidneys etc. He managed 23 years before he finally succumbed to the complications of his health. I think it is important to acknowledge those seriously affected by encephalitis, as well as those who may recover.
Hi Fran, I am so sorry to hear about your experience of encephalitis. We host online support groups if ever you would like to connect with others who have similar experiences. They can be found here: www.encephalitis.info/online-support-meetings
My perfectly healthy 10 yr old daughter presented with cold symptoms, and few hrs later a fever, and 3 hrs later a seizure and coma, she never woke up. The one thing not mentioned is that I have learned how important it is that an immediate MRI is done and some CT scans can look normal. My daughters MRI was delayed and she hemmoraged, and EVD was placed and she lasted 127 days before another seizure and sepsis. Our medical systems need more training. I truly beleive an MRI could have given her a chance at recovery. We had her medical journal published in Canada. Doctors need more awareness and also to listen to parents intuition. My gut said brain swelling. They told me Infuenza A was the cause. which she recovered from 2 days later. Encephalitis wasn't even considered until it was too late. Thankyou for sharing.
Thank you for sharing. I am so sorry to hear about your daughter. If ever you would like to connect with others who have a similar experience, we do have some online support groups. One for parents of children affected by encephalitis and one for those who have lost loved ones as a result of encephalitis. www.encephalitis.info/online-support-meetings We also have a stories page if you wanted to share your story with those who visit the Encephalitis International website for support and connection. www.encephalitis.info/submit-your-story
If Dr Michael Zandi wants any more information we be happy to write to him and send off for possible research My dad aged 81 died from this Encephalitis. He also had IBM myositis a rare condition caused by the body attacking the muscles. Encephalitis and IBM myositis both say no link to the condition although I query it and say that Encephalitis attacks the brain proteins as it thinks so type of germ whereas IBM attacks the muscles in the body. We have no idea why my dad caught it he never had a fever but had a headache once or twice which we put down to stress or just a headache. He did forget things his GP put down to old age and getting on in years. He would move his fingers like he was playing an organ but, he told us he was doing excises to keep his hand from failing. The seizures were nasty and horrible to witness he would chew his bottom lip until bled and stare. He would often swear (not like him at all) to staff on the ward when he was talking, to winking, and trying to say something but mumbling it or repeating the same word for example 18, 18 , 18 when is my birthday 18 which was tragic to witness or robin hood did we get that answer right Simon “yes dad” Robin hood did we get that answer right and it would go on until he went off to sleep or we changed the subject but would hook onto another word.
HI, please do get in touch if you would like to share your experience.
Thank you for an incredible story. I was diagnosed with ADEM (Acute Disseminated EncephoMyalitus) in 2003. I had almost the same symptoms as Mike, not knowing the source - we think it was either a tick bite or mosquito bite while on holiday Christmas 2002. I was comatose for 10 days and on life support. You story brings tears to my eyes, - I have been there. The hardest part of it was the withdrawal of my civil aviation medical, that broke my heart. However as you say, I am alive. (My father, sister and brother in law were all medical doctors, they though it was time up). Thank you so much for making others aware of this terrible infection. When my friend took me to a doctor initially (after my behavior had changed) the doctor suggested post traumatic stress, related to I still don't know how or why he reached that decision. It's been 20 years plus now, I am unable to fly planes, however I hold a job down, - I have an adventure motorbike, I'm totally in love with it.
I got my encephalitis a year into covid, couldn't do anything for so long, and all the covid stuff about vaccinations was infuriating
Hi, sorry to hear this. We have a support phone line and email if you want to get in touch at any point.
My wife was diagnosed viral encephalitis in 2009 and fully recovered she died in 2023 . It was a long hard journey…..very hard…..I only mention this because as the lady in the video mentioned a new normal……I wish the best to all of you
Very nice doctor
Chk out citizens in Less Develop Countries!
Our website has information on how we are currently trying to reach out to other countries and how you may be able to help. www.encephalitis.info/changemakers
Please help bring the Enterovirus 71 vaccine to the US. The virus is here! My husband (36) was in a long coma from this and will never be the same. We are in IN and have connected with multiple families via social media across the Midwest impacted by HFM in this way. Daycare providers have no idea that Hand Foot Mouth can be fatal! We need the vaccine and education. I’m begging for help on this, as a 36 year old near widow, now care taker and mother of 2 babies/toddlers.
Hi, thank you for sharing and I am so sorry to hear about your experience. Please do get in touch with our support team if you would like to talk though anything.
I had encephalitis 2 months ago. And so much of what you described is exactly what I'm going through now. No I'm not the same person anymore I'm sort of detached and lost. But watching this has given me hope and comfort to move forward knowing I'm not alone. All the very best to you Mathew thank you for posting.
Please do get in touch if you would like any support though your recent experience of encephalitis.
Lucy you are such a great person that I’d love to meet ,
How do you join this group ,
Hi, please get in touch with us on our website and we can help. www.encephalitis.info/online-support-meetings
Poor Girl ❤
My husband was recently diagnosed with this after 6 months of misdiagnosis. The neurological community should be more aware of the signs and be trained to test for this early on when someone presents with seizures and memory loss/confusion after being perfectly normal. This illness is life changing and it’s amazing how hard it is to find a neurologist who is trained in treating it.
Please do get in touch if you need any support.
Please raise awareness with Brain on Fire film true story on this condition! :(
We have the book on our website also :)
I am Gabriella. I saw Dr Nick Davies this week on 120 harley Street in London. He is a lovely man and very attentive. Since he saw me I am feeling worst. I can barely walk… I asked Mr Davies Please watch the Brain on Fire film what is about Autoimmune Encephalitis based on a true story with Susan Cahallan. Sometimes no MRI no Blood test shows it. Over 7 weeks now having worsening symptoms in this 3 days it persisted symptoms. I can barely function and the ongoing pressure on my head and the way it is harder to walk every day. Please someone help.
Please do contact Encephalitis International for support if you feel it will help.
I got all neuroligical symptomsnow with encephalitis since the 3rd may. I do not have psychological symptoms at all just pain/ No MRI No Ct scan no blood test did not show it. I went through a million test like Susan Cahalan in Brain on Fire. Later I developed crazy ovarian pain. I went for even abdominal MRI showed nothing. And the pain in my ovary as it can cause it ovarian teratoma. What I did not have is a lumbar puncture. I have no idea how to prove the ovarian teratoma. It says I did my research that with people with anti nmdar receptor encephalitis it is harder to see the teratoma because it is too small.:(
I went thru this recently and I was so scared of this
Hi, please do get in touch if you would like any support. We have lots of information and resources on our website plus a support line and virtual gatherings.
Thank for ur precious detailed info !
This really resonates. Thanks for this
Inspiring! God bless you!
Prayer sure helps
I think I have this now. But noone believes me. Sad!
Hi, please do visit our website for any information on how we can support you.
I was just discharged with Autoimmune Encephalitis, I'm English and married in the United States, I have no health insurance, and no green card yet, in England, they put me in multiple psyche wards through a misdiagnosis of schizophrenia, after spending 12 months institutionalised my wife helped me move here through a marriage green card, and finally got me out of England; two years into our marriage, I began to have a seizure, which triggered the autoimmune encephalitis, I was just discharged last week after two weeks in hospital, a spinal tap, and 14 days on a Saline IV, I'm so thankful to be alive, and had never heard of this condition beforehand, I didn't know my own name, but I knew who my wife was, its horrible to think that if this happened in England, they would have resectioned me into a psyche ward through misdiagnosis, and I would be dead; I feel very lucky.
Thank you for sharing your experience. Our website has lots of information on how we may be able to support you, if required.
Hey do you think that there is correlation between benzos an encepyhltis ? Because when people come off benzos they experience all the exact same symptoms as encephylitis. I mean down to a t. An bensos can cause a weakened immune system also can cause nervous system damage. All correlated to encephylotis. If this was the case then people thar are On benzos for long period of time anthen come off may have drug induced encephyltis. All the symptoms are exactly the same. Also benzos can treat brain inflammation. Well then due to there addictive nature it would make sense that benzos can actually cause brain inflammation when taken off. An I beleive that many people are suffering , not from benzo withdrawal, but from benzo induced encephyltis.
Hi, we have lots ongoing research into encephalitis. This is not something we have come across. Please do visit our website for information on our research.
@@encephalitisinternational you should do research on this. More research needs to be done on what long term benzodiazepine use actually does. They know that it can cause bind , benzo induced nuerological disorder, wich is potentially linked to nueroinflamattion. Wich can also be types of encephalitis. Or encephalopathy. I'll look into your site more tho thanks for the response.
@@encephalitisinternational I'll check out your site. But more research needs done on long term benzodiazepine use. An it's potential relation between nueroinflamattion an encephalitis.
Thank you for sharing your story
I’d love to get a vaccine for Enterovirus 71 in the USA. It is available in other countries, but not here. Please! This virus caused both Encephalitis, Meningitis, Myocarditis, Rhabdo, Pneumonia, Lung Hemorrhage, and 6 Pulmonary Emboli! A long coma and recovery at just 36. The virus was from my daughter’s preschool and we know of many children who also suffered.
Hi, please do visit our website for ways we may be able to support.
Thank you
I have this. How do I get help?
Hi, please visit our website for ways we can support you.
Is there a support group in Germany? I could not find one. Patients in Germany reading this please comment. (:
Hi, we have online support groups which you may be interested in. Please visit our website for more information.
Sir i am dr.vinayak patil. My 5 year old daughter has autoimmune encephalitis and is in the hospital since 15 days. Ivig inj, inj methylprednisolone, inj levipil(Levetiracetam), inj Fosphenytoin (neofost), inj Gardenal (Phenobarbitone), inj Dexmedetomidine all started on drip. still did not get much result, seizures came 3/4 times a day then in drs given Midazolam drip and put on the ventilator. And it helped in reducing the spikes in the brain . Then some seizures went away. After applying midazolam drip after 2 days midazolam inj were stopped. And removed the ventilator. But now after reducing midazolam, seizures are still occurring in less quantity. Now there are 3 anti seizures drugs along with inj Lacosamide and tab Tapomac. There is still some abnormality in the eeg Feedback
Hi, please do get in touch with us to see if we can support you in anyway. We have a phone line or email support which can be seen on our website.
I had a seizure and posteriorly dislocated both shoulders. And it scorched my corneas so I was blind for almost a year. Prosthetic corneas do the trick.
Hi please do get in touch if you would like to see how we can offer you some support.
😢😢😢😢😢 i feel your pain my sister
You're a great mother, and a great person for telling your story.
Wow i got mengitis and then mine also turned into encephalitis.and wow he is going threw same as me im struggling with liking the new me i desperatly want to get back to the old me im just a shadow of the old former me 😮💨
Hi, please check our website for ways we may be able to support you.
I was diagnosed with Autoimmune Encephalitis last year, in August. My life has not been the same since. I was having two seizures per day, behaving as I was completely out of my mind. I wasn't me, and I do not have many memories. I was lucky to have been diagnosed quickly, within a month. I started the treatment with steroids, immunosuppressors, anti seizure medication, and a bunch of other stuff to mitigate side effects... Thanks for posting this.
Thank you for sharing your experience. Our website has lots of information on how we may be able to support you, if required.