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.

Great video! I also made a great interview on this topic: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-WfDnYn0t-Ss.html

I have had encephalitis twice now. First time in 2022 and the last time was September 2023.. i was put in a coma for 2 werks and had to stay in hospital for a month .The last time was was admitted as nothing was stopping my seizures. I have absolutely no recollection of these hospital stays, my youngest sons birth notging from the last 4-5 years. I feel like i am always angry and i am never getting the answers i need. This situation has depressed me completely, its been just over a year and i dont leave my room much ,i feel like a failure all thr time, like my kids deserve so much more and rhat i am dumb. Some days i cant talk properly it ruins me, i hate it. And there is noone to talk to about this, qnd trust me ive tried to get into groups with people that have the same situation, but noone here has. Im just so tired. Regard Stacey.

Either pronounciation is correct, whether it is 'en-ceph...' or 'en-kef...'.

My son had his encephalitis at 9 years old. Unfortunately signs have shown he may have had a relapse which I’ve been told is rare, and he’s just turned 16. He’s to have a repeat mri and an eeg this week. He has signs of dementia and severe memory loss which is also a lasting condition for encephalitis which for someone who is doing their GCSE’s next year is worrying.

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Hi, I saw the film Oliver about Roald Dahl's daughter. Oh no, I'm sorry that Gill felt like she had covid and she went to the hospital and had lumber puncture and she jad the dame diagnosis as me Herpe Simplex Encephalitis but thats terrible what happened having to be transferred to different hospitals the operation on her throat and food tube I can pronounce it but I can't spell it. I remember the covid pandemi when nobody was allowed visitors or only once. Gosh 5 werks on a ventilator 💔 It was shortly after that she'd changed and took her off her seizure medication. thewirld needsto have better knowledge and more better encephalitis aawarenessfor better outcomes and build better futures global ly for everyone affected by encephalitis and their loved ones rwgardless of their backgrounds age, etc. I'm so sorry. I'm sending you my sincere condolences. ❤ Take good care of yourself. Time is a healer. Don't be too hard on yourself.

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Hi Robyn, I'm so sorry for your loss. Encephalitis affects the whole family equally. It's a life-threatening and often fatal neurological condition. I'm sorry your mum has dementia. It's so emotional being a caregiver. I'm very passionate about encephalitis awareness, everyone who has had encephalitis their loved ones all across the world. I am sending you my sincere condolences. It's so heartbreaking. Time is a healer. Look after yourself and your mum. It's important to take time out for yourself. In a different way I can emphasise about how it felt to lose a parent (my mum) 5 and a half years ago, she had dementia. I'm the one who had Herpes Simplex encephalitis the day after my first birthday. No, it was horrible at the time losing my mum, it took about a year to register with me, I still miss her to this day, but I feel I can talk about it better now, My dad is not in the best of health, but I think I will now know what to do and when to do it, whenever the time comes, so I completely empathise with having a parent to care for, not long after losing one. I fully understand, Back to my point, there needs to be new, better nedical treatments coming out, education all about encephalitis for health professionals, and the more professionals , treatments, earky access to treatments for all cahses of encephalitis. Together, we can build better futures globally. Take good care of yourself. I pray for you. 🙏❤️

My sister got sick on her birthday May 21 of this year. She’s been and ICU for five months and we are putting her in a rehabilitation today and I feel like I have no choice but to take her there because the doctors and the nurses are telling me that she’s too much for me to handle, I know they mean well I know this is a better decision for her. She’s only 23 years old. She’s my baby this disease has took a toll on me and my baby sister. Yes she is the one going through it but just being beside her bedside every day, it’s killing me inside and out get better Sabrina 😍 I love you Bri Bri❤

Hi Ava, Phillippa, and Bella. Lovely to see you all. I see your vision changed earlier in the year and is very exciting Phillippa and your new mission is wonderful rebuilding better futures around the world. A world without death and disability from Encephalitis around the world. I missed this podcast at the time. New vision and objectives, sound very interesting. I completely agree, Phillippa that "everything" needed a rethink. Good point Phillippa, educating health professionals and treating Encephalitis. There isn't enough research, and research helps to save lives. I can't wait to be involved in research again to help to save lives globally. Empowering. I'm extremely passionate about all these new aims objectives, values, goals and & I'm very dedicated to helping to save lives worldwide and to prevent death and disability from encephalitis from all backgrounds and all ages. We are all passionate. I completely agree with everything Phillippa is saying. It's a great idea for change, for a world without encephalitis . Everyone has to be included from all coutries and all cultures, and getting the lanuage right is so important. Fancy me missing this great podcast. It has been great fun. Yes inclusivity is so crucial. I love your new brain logo . I completely agree with everything. I have the same aims, values, objectives ,mission, etc. Indeed it is incredible working with the World Health Organisation. I will also watch the climate change podcast. Thank you so much Ava and Phillippa. I'm so excited about the future too Phillippa.

Hiya Kevin! It's Paula off the virtual gatherings. 3 months is a long time, I'm sorry you went through all that, in and out of hospital every couple of weeks. Nobody could or would wish to do it alone. You are a great photographer, you are also a lovely person, Kevin. Anxiety, panic attacks and paranoia are all horrible, we share these after effects and I would like to connect with you Kevin. You have a great sense of humour Kevin. Exactly sometimes families don't understand our after effects. Feeling overwhelmed, and processing speed are sone of my after effects too. We both want to be changemakers Kevin. Never give up is my motto. Remind myself Im still alive, I was 1 but I understand where you're coming from. God bless Kevin. Stay positive.

Hi Ceiwyn, your daughter was 2 years younger than I was but I didn't have autoimmune encephalitis. No, you are not triggering at all. Bless Chloe. The nurse didn't know about encephalitis. I used to be similar to Chloe apart from I didn't have the fatigue which I understand is very disabling. This charity is wonderful . I'm glad Chloe had a very supportive schooling that's good. I didn't get that. Mind you there was nothing out in those days when I had encephalitis. Thats good that Chloe had a great neurologist. That's brilliant that Chloe has got all that support. Beautiful photographs. Great video thank you.

Hi Ava and Michael, Yes, the more we know about encephalitis, the way the brain works etc. Complications from antibodies attack the brain and cause inflammation/swelling. 20% deaths, working towards zero deaths worldwide is key. Good point Michael, there's not much room in children ( i.e like myself I was 1when I had encephalitis, there was not much room for the brain swelling) as there is for older adults. It is very interesting about the immune system. Yes, the capacity between the brain and skull is very interesting, Ava. There needs to be more specific treatments out for these antibodies and viruses that cause death. Early diagnosis is key, but many cases are misdiagnosed for other illnesses or a stroke. Whatever caused the Encephalitis has caused the swelling/inflammation leads to death, but all precautions to be taken to prevent death from Encephalitis. MMR vaccine is a good idea to prevent Measles Encephalitis . The more vaccines for different things, that can help to prevent getting it. Too many people around the world don't know what encephalitis. I really value your wonderful work Ava. Nobody deserves to lose a family member/friend. The support team are absolutely a marvellous help. Thank you so much Ava for everything you do for everybody who have had encephalitis and their loved ones globally. I'm also very passionate about preventing death from encephalitis too. It's a life threatening neurological condition. As Michael said, there needs to be more specific training for medical staff working in this field , which can help to diagnose and treat encephalitis as early as possible, this can then lead to better treatment, maybe newer treatments and better outcomes. That's our aim,

Hi Ava and everyone at Encephalitis International. Happy belated 30th Birthday Encephalitis International. Sorry I'm late, but I now have more time to watch these podcasts I'm catching up with. I wish I could have come in person, but until my OCD gets better, I'm still housebound. Cheers! You are the most wonderful charity. I couldn't have asked for better. I wish something like this had been out just after I had encephalitis the day after my first birthday, or even tbe first 5 years, but I had to wait over 40 years. I hope nobody else has to go through thst without nothing available like I did. I'm so glad that there's more out now about encephalitis than ever before so keep up the wonderful work Encephalitis International.

Hi Ava and Scott, vaccines are vital in saving lives and preventing getting covid, measles, and encephalitis. Public health awareness is so important/crucial. I agree with everything. I would love to have a copy of Brian's book. How much is it? I will have a look on your website. I look forward to watching the film. Yes, the science is very interesting and important. The vaccines are 100% safe. I keep up with all the neuroscience. He's a brilliant consultant in Philadelphia. It looks like I missed the film. I have got a backlog of your podcasts to watch, and I will do. Very important/crucial information. No, I know, nothing at all is based on race. Everyone can be autistic regardless of any race, ethnicity, the list is endless, etc. The pandemic did get worse, I agree. Indeed, it is very important to follow all the science globally. They are essential to help people to live longer. Science is very interesting and important/crucial. Not all websites are safe/true, but yours is the best! I look forward to your third film, Scott. This is a brilliant podcast, Ava, thank you so much. You always do a wonderful job, Ava. I value you, Ava, and all your team a lot! I can donate a small amount by cheque. Thank you so much for this.

Perez Barbara Robinson Deborah Jackson Steven

Clark Donna Perez Paul Martin Richard

Help me

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My brother had encephalitis because of high fever, Actually he's diagonsed with hydronephrosis (left side bcz of thin ureter passage causing recurring infections) that is why he got the same symptoms as above... he was behaving very strangely he wasn't even able to recognise us and was still... but thank God he's fine now we had to stay 5 days in the hospital and he was admitted in ICU for some hours but later after 2 hrs he was completely concious... and he was remembering nothing... he was asking why is he even in ICU :(

This is exactly my story and experience. 😢

My uncle has this, and cant communicate with us. Keep him in your prayers.

I had this very bad and almost lost my life to it. My doctors didn’t believe me they just kept sending me home from the ER. They told me I just had anxiety. Thank God for my mom (she’s a nurse). During my hospital stay she diagnosed me. They didn’t believe her and she demanded a spinal tap to be done. It came back positive. She saved my life. ❤️

Thanks for all this info

Thank you. Your efforts are most appreciated!

I had Anti NMDA encephalitis, 11 years ago when I was only 16 years old. This video is a gem. Thank you.

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I’ve had this since I was 10, I’m 22 now and still searching for care and treatment after being told it was severe anxiety and depression for years. I’m grateful organizations that raise awareness to this exist❤️

how do you get attention to tbis disease via video my daughter is 17 and cannot get treated

Thank your mother everyday she really loves you. One time i was sick and begged my mom to take me to ER she said "it will pass".

My mother is recently infected from JEV. 3 weeks ago. Please suggest treatment and rehabilitation care to be given. How long does it usually take for a person to talk or walk again?

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.

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.

Thanks, Encephalitis International for excellent and very informative stories

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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.

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?

Bless you for sharing, I am sick with Shingles and a bit foggy and just off I hope I escape that! Keep going 💯🙏🤗

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.

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.

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.