I had autoimmune encephalitis 5 and a half years ago. The encephalitis society helped me understand, its an amazing resource the staff for anyone involved with it! Been a survivor, friend but most importantly family. I was written off but it's amazing what you can achieve with a positive outlook. I was told by a neurologist. I would struggle to talk and walk properly again. I'm proud too say I support other disabled individuals too live independently through council and social services funding. I have my limitations but I am me and I'm incredibly proud of that fact. I hope too inspire others !!!!
I feel so sorry for poor Clair, a very sad story but she is making an excellent recovery. I just hope you get all the help you need Clair to keep on improving. 🙂
It's SO said to hear that poor Clair will never recover awh? It must be terrible not knowing who she is with and where she is, also her severe memory problems etc. Well all I can suggest is that if there's still "some things" that Clair likes doing to take her mind off things then try to concentrate on them or put them in her diary to plan to do them anything in advance, ,as little as listening to her favourite CD's, cassettes etc that could cheer her up or maybe watch quiz programmes where she could have a bit of fun and join in. Try to look forward to nice things Clair and think ok I know I won't make a full recovery But the most important thimg is "I STILL HAVE A LIFE and I will TRY TO ENJOY SOME OF THE NICE THINGSthat I CAN DO!! This sort of attitude is the best way to move forward so that you're "not always dwelling on the negatives" because that wouldn't help.
My ensephalitas story started when I had a sezures on the kitchen floor about 2 years ago, if I remembered correctly, after coming back from camp with loads of bites. I am 16 now and thankfully I don't have any long term effects or at least not any major ones that effect my life. Edit: I couldn't be more great full to all the doctors at GOSH and UCLH, esspecaly my main doctor who got me swiftly on to the treatment, which she believes was what enabled my good recovery. My thoughts go out to everyone who is suffering with it or its effects.
I had autoimmune Encephalitis and I survived it .. I'm so thankful and grateful to have survived and and gone truly this had experience. I would have never survived without God blessing and family support and my Friends as well. It was a living nightmare but now I'm so grateful I'm back. I have been on medications for over a year now and currently I'm on my way to minimise it and quit all medications hopefully. I hope no one ever go through this rare illness.
Thank you for sharing some of your experiences with us, Amoura. We are here for you. Please don't hesitate to reach out to us at support@encepahlitis.info if ever you need any support.
I just read your story me too i had my niece who got this disease 5 years ago at the age of 13 she still had seizures its traumatising she was a brilliant student now unable to walk by herself n unable to attend school lost all her friends only supported by relatives n her doctors and we are from Mauritius the doctors said it was a miracle that she survived she is our blessed child
Thank you for sharing your niece's story with us, rakeeyaauladin985, we are here for you and your family. Please don't hesitate to reach out to our support team for advice, information, signposting or a listening ear. You can reach us at support@encephalitis.info or +44(0)1653699599
It is even harder when your family is not that open to understand why you are forgetting things over and over and not realizing that their daughter is no longer the same after encephalitis. I am that unfortunate one who struggles trying to make them understand but they just won’t accept it.
I know how lucky I was. Back a few years ago, I had the beginnings of memory problems. In just a few days, I couldn't remember how to log on to Facebook. My husband immediately took me to the hospital. I was in the hospital for 2 days (after ruling out stroke) before they could tell us what was wrong with me. I had encephalitis. I spent a total of a week in the hospital, having it treated with antibiotics. After I got home, I found I had no memory of the week in the hospital. And only spotty memories about a week before that. I asked my husband if I had been sedated during the week. He said no. I acted like I wasn't even sick. I guess I had several visitors and talked to them all. That was what scared my husband the most. I didn't look sick, but the doctors told him it could go either way.
Thank you so much for sharing your story with us Brenda, and we are so sorry to hear of your encephalitis a few years ago. We are here for you if you or your husband ever need any support - you can get in touch with us at support@encephalitis.info, or call us on +44(0)1653699599
Thank you for sharing Lisa. Anytime you, or you family are in need of any support you can email us at support@encephalitis.info, or call us on +44(0)1653699599. You are not alone.
My daughter has just came back to us after 8 months of hell we are lucky we got her back but we will never ever forget how painful it is for the family aswell she hand anti nmda receptor encephalitis
I suffered with encephalitis in 4 yrs ago. I was in the hospital for 6 months. I slept for most of it. I was told I would be awake about 10 minutes 2 or 3 times a day. I had feeding tube and everything. To this day I still need assistance with many things. I use a walker or cane because my balance is off. I'm not aloud to use the stove. Once I forgot to turn the burner off. Another time I just walked away and forgot to go back till I smelled it burning. These were more recent cause the first couple yrs I had a home health worker. After that I moved a few houses down from my parents and would go to their house when my husband was at work. It's only because of the covid stuff that I started spending time alone at home. I still can't do a lot of things. I can be doing anything, then just forget how to do it. Nite hours usually after 7 or so is when my thoughts are the clearest. Good luck to you. And your continued recovery.
We are so sorry to hear of how your outcomes are affecting your daily living since having had encephalitis 4 years ago, Rebecca. You are not alone, we are here for you. Please don't hesitate to reach out to our support team at support@encephalitis.info any time you have a question.
I'm here because of Brain on Fire movie. Is there a US based society for encephalitis to help spread awareness? From what I've been reading in the comments it doesn't seem as well known and that could be a problem. The epilepsy clinic I was going to have next week got rescheduled for April because of Covid. I guess we'll see what the future holds between now and then 🤷♂️
Thank you for your comment and for watching, Enzo. The Encephalitis Society is an international charity: we raise awareness, fund and collaborate on research, and provide support to those affected worldwide. You can learn more by visiting our website www.encephalitis.info, or you can email or call our support service at support@encephalitis.info or +44(0)1653699599 with any questions you have. You are not alone - we are here for you.
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, if you would like to chat to anyone at Encephalitis International we have an email address you can contact support@encephalitis.info or a support line +44(0)1653 699599
Thank you for your question, midnight_night. Encephalitis is an inflammation of the brain. It can be caused by many different things. Some of the causes have treatments, some don't, so in these cases treatments will focus on the symptoms. Once the inflammation has been controlled people can be left with a brain injury. You can learn more about encephalitis, it's treatments, recovery and after-effects by watching this short animated series: ua-cam.com/play/PL6h03a0LQ8NHsNbw_FIs0OKRDAiY1_AoH.html
Thank you for watching and for your comment, Mohamed. We are so sorry to hear of your daughter's encephalitis and hearing loss. Our support team are here for you and your family, to listen, advise and signpost as needed. Please do reach out to support@encephalitis.info, or call us on +44(0)1653699599. You are not alone - we are here for you.
Thank you for your comment Clair, we are so sorry to hear of your cousin's diagnosis and memory problems. Our support team are here for you, you can reach them at support@encephalitis.info, or call them on +44(0)1653699599
شكراً لمشاهدتك لارا ولتعليقك. يدور الفيديو حول التهاب الدماغ ، وهو التهاب يصيب الدماغ. يصيب حوالي نصف مليون شخص كل عام. يمكن أن يصيب أي شخص في أي عمر ، ويترك للأشخاص آثارًا طويلة المدى. في حالة كلير ، تأثرت ذاكرتها لدرجة أنها تحتاج إلى دعم من عائلتها وأدوات مثل يوميات للاستمرار في حياتها اليومية.
@@encephalitisinternational *آه شکرا جزيلا لک علی المعلومة التي لم أکن أعرفها من قبل و أتمنی الشفاء لکل من أصيب بهذا المرض.* *ولکن عندي فضول هل أنت عربي؟؟ لأن طريقة کلامک لا تدل أنک مترجم کلامک من جوجل بل تتحدث اللغة العربية جيدا.*
نحن نعمل بجد لرفع مستوى الوعي بهذا المرض ، حيث أن 80 في المائة من العالم لا يعرفون ما هو. شكرا لك على كلماتك الرقيقة حول ترجمتنا. لسوء الحظ ، أنا لست متحدثًا باللغة العربية بطلاقة ، لكني مدربة على استخدام مترجم جوجل بكامل إمكاناته.
Hi German - thank you for reaching out to us. For advice on your situation, please call our support line on +44(0)1653699599, or email us at support@encephalitis.info. You can also sign up for our support team to contact you by filling in the form on this page of our website: www.encephalitis.info/support. Here for you.
Thank you for your comment, Bottle. The word "encephalitis" comes from the ancient Greek "encephalo" (meaning relating to the brain) and "itis" (meaning inflammation). Here in the UK where the charity is based, encephalitis is pronounced with a hard "k" sound as it is in Greek. In the US it is pronounced with a naturalised soft "c" sound.
I had autoimmune encephalitis 5 and a half years ago. The encephalitis society helped me understand, its an amazing resource the staff for anyone involved with it! Been a survivor, friend but most importantly family. I was written off but it's amazing what you can achieve with a positive outlook. I was told by a neurologist. I would struggle to talk and walk properly again. I'm proud too say I support other disabled individuals too live independently through council and social services funding. I have my limitations but I am me and I'm incredibly proud of that fact. I hope too inspire others !!!!
I feel so sorry for poor Clair, a very sad story but she is making an excellent recovery. I just hope you get all the help you need Clair to keep on improving. 🙂
Clair is an inspiration. Always upbeat and sees humour and the bright side to everything. she’s a lovely girl I’m so proud to call a friend.
I watch this and it only hits home how lucky I was!
Thank you for sharing your experience!
It's SO said to hear that poor Clair will never recover awh? It must be terrible not knowing who she is with and where she is, also her severe memory problems etc. Well all I can suggest is that if there's still "some things" that Clair likes doing to take her mind off things then try to concentrate on them or put them in her diary to plan to do them anything in advance, ,as little as listening to her favourite CD's, cassettes etc that could cheer her up or maybe watch quiz programmes where she could have a bit of fun and join in. Try to look forward to nice things Clair and think ok I know I won't make a full recovery But the most important thimg is "I STILL HAVE A LIFE and I will TRY TO ENJOY SOME OF THE NICE THINGSthat I CAN DO!! This sort of attitude is the best way to move forward so that you're "not always dwelling on the negatives" because that wouldn't help.
My ensephalitas story started when I had a sezures on the kitchen floor about 2 years ago, if I remembered correctly, after coming back from camp with loads of bites. I am 16 now and thankfully I don't have any long term effects or at least not any major ones that effect my life.
Edit: I couldn't be more great full to all the doctors at GOSH and UCLH, esspecaly my main doctor who got me swiftly on to the treatment, which she believes was what enabled my good recovery.
My thoughts go out to everyone who is suffering with it or its effects.
Did you have viral encephalitis or was it autoimmune because after I got bitten from infects this happened to me
I had autoimmune Encephalitis and I survived it .. I'm so thankful and grateful to have survived and and gone truly this had experience. I would have never survived without God blessing and family support and my Friends as well. It was a living nightmare but now I'm so grateful I'm back. I have been on medications for over a year now and currently I'm on my way to minimise it and quit all medications hopefully. I hope no one ever go through this rare illness.
Thank you for sharing some of your experiences with us, Amoura. We are here for you. Please don't hesitate to reach out to us at support@encepahlitis.info if ever you need any support.
Thank you for putting that together
Thank you for your thoughtful comment, Mat!
I just read your story me too i had my niece who got this disease 5 years ago at the age of 13 she still had seizures its traumatising she was a brilliant student now unable to walk by herself n unable to attend school lost all her friends only supported by relatives n her doctors and we are from Mauritius the doctors said it was a miracle that she survived she is our blessed child
Thank you for sharing your niece's story with us, rakeeyaauladin985, we are here for you and your family. Please don't hesitate to reach out to our support team for advice, information, signposting or a listening ear. You can reach us at support@encephalitis.info or +44(0)1653699599
💗Its beautiful to see a families love grow stronger despite such adversity. Many are given up on.
Glad you enjoyed the video, CheeryChum78!
It is even harder when your family is not that open to understand why you are forgetting things over and over and not realizing that their daughter is no longer the same after encephalitis. I am that unfortunate one who struggles trying to make them understand but they just won’t accept it.
Have they watched this film?it might help
I am sorry for our memory problems, to family and friends of people with encephalitis.
I know how lucky I was. Back a few years ago, I had the beginnings of memory problems. In just a few days, I couldn't remember how to log on to Facebook. My husband immediately took me to the hospital. I was in the hospital for 2 days (after ruling out stroke) before they could tell us what was wrong with me. I had encephalitis. I spent a total of a week in the hospital, having it treated with antibiotics. After I got home, I found I had no memory of the week in the hospital. And only spotty memories about a week before that. I asked my husband if I had been sedated during the week. He said no. I acted like I wasn't even sick. I guess I had several visitors and talked to them all. That was what scared my husband the most. I didn't look sick, but the doctors told him it could go either way.
Thank you so much for sharing your story with us Brenda, and we are so sorry to hear of your encephalitis a few years ago. We are here for you if you or your husband ever need any support - you can get in touch with us at support@encephalitis.info, or call us on +44(0)1653699599
My daughter has been battling Autoimmune Encephalitis for 5.5 years. My husband was also diagnosed a year ago. His story is much like Claire's.
Thank you for sharing Lisa. Anytime you, or you family are in need of any support you can email us at support@encephalitis.info, or call us on +44(0)1653699599. You are not alone.
How she's been battling what they been doing. Did they figure out the root cause
My daughter has just came back to us after 8 months of hell we are lucky we got her back but we will never ever forget how painful it is for the family aswell she hand anti nmda receptor encephalitis
I suffered with encephalitis in 4 yrs ago. I was in the hospital for 6 months. I slept for most of it. I was told I would be awake about 10 minutes 2 or 3 times a day. I had feeding tube and everything. To this day I still need assistance with many things. I use a walker or cane because my balance is off. I'm not aloud to use the stove. Once I forgot to turn the burner off. Another time I just walked away and forgot to go back till I smelled it burning. These were more recent cause the first couple yrs I had a home health worker. After that I moved a few houses down from my parents and would go to their house when my husband was at work. It's only because of the covid stuff that I started spending time alone at home. I still can't do a lot of things. I can be doing anything, then just forget how to do it. Nite hours usually after 7 or so is when my thoughts are the clearest. Good luck to you. And your continued recovery.
We are so sorry to hear of how your outcomes are affecting your daily living since having had encephalitis 4 years ago, Rebecca. You are not alone, we are here for you. Please don't hesitate to reach out to our support team at support@encephalitis.info any time you have a question.
😢😢😢
I'm here because of Brain on Fire movie. Is there a US based society for encephalitis to help spread awareness? From what I've been reading in the comments it doesn't seem as well known and that could be a problem. The epilepsy clinic I was going to have next week got rescheduled for April because of Covid. I guess we'll see what the future holds between now and then 🤷♂️
Thank you for your comment and for watching, Enzo. The Encephalitis Society is an international charity: we raise awareness, fund and collaborate on research, and provide support to those affected worldwide. You can learn more by visiting our website www.encephalitis.info, or you can email or call our support service at support@encephalitis.info or +44(0)1653699599 with any questions you have. You are not alone - we are here for you.
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.
Help me
Hi, if you would like to chat to anyone at Encephalitis International we have an email address you can contact support@encephalitis.info or a support line +44(0)1653 699599
I would like to ask if this encephalitis is easy to cure now?
Thank you for your question, midnight_night. Encephalitis is an inflammation of the brain. It can be caused by many different things. Some of the causes have treatments, some don't, so in these cases treatments will focus on the symptoms. Once the inflammation has been controlled people can be left with a brain injury. You can learn more about encephalitis, it's treatments, recovery and after-effects by watching this short animated series: ua-cam.com/play/PL6h03a0LQ8NHsNbw_FIs0OKRDAiY1_AoH.html
❤️❤️❤️
❤️
Thank you!
My daughter 29 lost hearing for last 26 years due to brain cell dammage (encephalitis) is their any cure?
Thank you for watching and for your comment, Mohamed. We are so sorry to hear of your daughter's encephalitis and hearing loss. Our support team are here for you and your family, to listen, advise and signpost as needed. Please do reach out to support@encephalitis.info, or call us on +44(0)1653699599. You are not alone - we are here for you.
How long will it take to remember family members, my cousin is diagnosed now with encephalitis:(
Thank you for your comment Clair, we are so sorry to hear of your cousin's diagnosis and memory problems. Our support team are here for you, you can reach them at support@encephalitis.info, or call them on +44(0)1653699599
💔🖤
Mera encephalitis hua tha10years ago
*بالرغم أنني لم أفهم کثيرا حول مايدور في الفيديو ولکن علی ما أظن أنه يتحدث عن مرض نادر 🤔🤔🤔*
شكراً لمشاهدتك لارا ولتعليقك. يدور الفيديو حول التهاب الدماغ ، وهو التهاب يصيب الدماغ. يصيب حوالي نصف مليون شخص كل عام. يمكن أن يصيب أي شخص في أي عمر ، ويترك للأشخاص آثارًا طويلة المدى. في حالة كلير ، تأثرت ذاكرتها لدرجة أنها تحتاج إلى دعم من عائلتها وأدوات مثل يوميات للاستمرار في حياتها اليومية.
@@encephalitisinternational
*آه شکرا جزيلا لک علی المعلومة التي لم أکن أعرفها من قبل و أتمنی الشفاء لکل من أصيب بهذا المرض.*
*ولکن عندي فضول هل أنت عربي؟؟ لأن طريقة کلامک لا تدل أنک مترجم کلامک من جوجل بل تتحدث اللغة العربية جيدا.*
نحن نعمل بجد لرفع مستوى الوعي بهذا المرض ، حيث أن 80 في المائة من العالم لا يعرفون ما هو. شكرا لك على كلماتك الرقيقة حول ترجمتنا. لسوء الحظ ، أنا لست متحدثًا باللغة العربية بطلاقة ، لكني مدربة على استخدام مترجم جوجل بكامل إمكاناته.
@@encephalitisinternational
*Thank you for your content and the information you offer I wish you good luck (i translated this in google lol).*
Thank you for your kind comment, lara (and excellent google translation!)
Encephalitis causes swelling of brain which can leave with a brain injury
That is an excellent summary, Immadi. Thank you for watching.
Help me doctors don’t believe I have this disease
Hi German - thank you for reaching out to us. For advice on your situation, please call our support line on +44(0)1653699599, or email us at support@encephalitis.info. You can also sign up for our support team to contact you by filling in the form on this page of our website: www.encephalitis.info/support. Here for you.
You guys spell it “enkephalitis”, it’s a c, not k
Thank you for your comment, Bottle. The word "encephalitis" comes from the ancient Greek "encephalo" (meaning relating to the brain) and "itis" (meaning inflammation). Here in the UK where the charity is based, encephalitis is pronounced with a hard "k" sound as it is in Greek. In the US it is pronounced with a naturalised soft "c" sound.
@@encephalitisinternational oh sorry didn’t know
i have this. It is no fun
Do reach out to our support team if we can be of any help - support@encephalitis.info