Hannah: Herpes Simplex Encephalitis Lived Experience
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- เผยแพร่เมื่อ 25 ส.ค. 2024
- Hannah Joels gives a presentation on her story at the My Brain: My Story event at the Liverpool Medical Institute, 19th October 2019. Hannah, a primary school teacher, fell ill with HSE in the Autumn of 2017. Watch almost 2 years on as she takes us on her journey from her time in hospital, through her rehabilitation, and the impact the illness has had on her and her family.
My Brain: My Story was funded by the National Lottery Community Fund www.tnlcommuni... as part of our Life After Encephalitis project.
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As a fellow survivor of encephalitis I can completely relate to this story, I ended up with a major headache and next thing I know I'm waking up in a hospital and my speech was extremely slurred. This channel is amazing and it feels good to know other people can relate to what I've been through.
Thank you for sharing your experiences, Micheal. So good to hear you have been enjoying the channel! If you have been enjoying watching other people's stories here on the TH-cam channel, you can read even more over on our website: www.encephalitis.info/Pages/Category/your-stories
I feel so sorry for you.
My heart goes out to this lady. I have encephalitis, too. It is tough.
You have just described myself , i have the same condition , its not fun , i am joining the society soon , go well all ! X
Hannah Thank you so much for your inspiration!!! You have helped me to understand encephalitis, I have a gut feeling I have since having covid. Doctors are still trying to figure out. Please keep me in your prayers 🙏. It’s been a long journey, I was told to take supplements for my brain, that is helping. I go for eeg and I’m seeing a new neurologist. Everything you mentioned here about your symptoms are everything I experienced but couldn’t put in words which is extremely abnormal for me, because words have always been something I also too was good at. Praying for your continued healing and everyone on here. Your story empowered and uplifted me, thank you so much!
Well I actually have all those things you described .When I get seizure I get brain blank , mood swings , and terrible memory.Sometimes I get nightmares ,but for five years I suffer with this illness I am miserable mood swings and bad memory.I cant even keep track of a nornal conversation. I sound like a sticking record. I repeating myself. But i have 3 children i love.So i carry on as best as i know.So your story shows me I am not the only one.Thank you.
I've just been initially diagnosed with Auto immune Limbic Encephalitis, and Hannah I want you to know you're not alone, your video was so inspiring keep going! Encephalitis may be apart of our lives now but it doesn't define us and you are a testament to that thank you!
Thank you for your wonderful comment, devkamal26, and for sharing some of your story with us. We are so sorry to hear of your recent Limbic Encephalitis diagnosis. Please don't hesitate to reach out to support@encephalitis.info if you need any support, advice or information. You are not alone - we are here for you.
Hi Hannah and encephalitis society. I had herpes simplex encephalitis the same as you in 2011. Many of the same symptoms, especially with remembering names I still need extra sleep. I have a catnap after lunch, and feel much better afterwards. Thanks for the talk
Thank you so much for your comment, and for sharing some of your story with us Jon. If you've not come across them before, our fact-sheets on memory and fatigue after encephalitis have some really useful practical tips: www.encephalitis.info/managing-memory-problems-after-encephalitis, www.encephalitis.info/managing-fatigue-after-encephalitis. Here for you.
My wife had HSE back in May 2020, what you have gone through is what we are going through now, we had to cope with covid so I wasn’t allowed into hospital after a phone call from the consultant saying prognosis wasn’t good... just sat at home waiting for the phone call... but she fought through and 6 months on we are battling with the serious short term memory problems, balance and confusion. Just want my wife back 😂👌
We are so sorry to hear of your wife's HSE in May and her difficulties since. You are not alone, cowsmart1 - we are here for you. Please don't hesitate to get in touch with support@encephalitis.info, or call us on +449(0)1653699599 for some support.
Dear Hannah, I'm happy to know you are feeling better , I wish you every recovery Take Care...
Thank you, you are so brave this has helped me so much
Thank you for watching cowsmart1, we are really glad to hear that it has helped
my daughter who is being diagnosed with NMDA autoimmune encephalitis , still there after second line and no response yet
Please do get in touch with us if you need some support, Mando. You can call us on +44(0)1653699599, or email us at support@encephalitis.info. We are here for you - you are not alone.
I really do sympathize with you and hope that your daughter gets the best treatment she requires A.S.A.P! Best of luck!
2022...still trying to get a diagnosis for my 18 yr old..born with Down Syndrome, very high cognitive ability. But at 8-9...strange behaviors started, thru the yrs regression loss of speech, agitation and zero social skills. She was a social butterfly, self sufficient and spoke words and used the phone.
Now, 18, 19 next week, all that's gone.
No explanation. Not born with Autism. No answers tho testing since 2012...now Duke U is willing. Encephalitis seems plausible. I'm a nurse and we investigated all else. We'll know I'm sure and take it from there.
Omg I can relate too this! I think I have encephalitis
Thank you for your comment, horselover7216. Our support team are here for you - you can call us on +44(0)1653699599, or email us at support@encephalitis.info. You are not alone.
I am not surprised that you have all those problems. I am not good at recognising unfamiliar faces and places, but I tend to be better at recognizing people when they talk, and I have had to use landmarks because I am rubbish with names of streets. I didn't know until recently that it had turned out to be Encephalitis, because nobody ever knew, and my parents just thought it was normal as it oftens to people who haven't had Encephalitis, so whether or not this was normal or was it my Encephalitis then? We never thought "at the time" when I was little, nor later on when my seizures stopped that I was going to College and I used to get lost what was going on to be honest I don't know why on earth there was no mention of long term inflammation of my brain or nothing isn't that weird though? Little did we know it can be permanent damage though. I don't know whether I have 'permanent severe brain damage" anyway. Oh well let's hope other people and their families don't have to go through all this like my parents and I did, that's why I am helping other people out now.
What kind of doctor who would know to diagnose these serious types of encephalitis?
Neurologist....they Should know
I've been in the hospital I'm currently in for three months.
They're keeping me here against my will.
My encephalitis is perminant.