Encephalitis - Clair's Story

Mera encephalitis hua tha10years ago

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 !!!!

You guys spell it “enkephalitis”, it’s a c, not k

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.

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 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

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.

i have this. It is no fun

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.

My daughter 29 lost hearing for last 26 years due to brain cell dammage (encephalitis) is their any cure?

I would like to ask if this encephalitis is easy to cure now?

How long will it take to remember family members, my cousin is diagnosed now with encephalitis:(

❤️❤️❤️

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 am sorry for our memory problems, to family and friends of people with encephalitis.

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.

Encephalitis causes swelling of brain which can leave with a brain injury

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 🤷‍♂️

💔🖤

بالرغم أنني لم أفهم کثيرا حول مايدور في الفيديو ولکن علی ما أظن أنه يتحدث عن مرض نادر 🤔🤔🤔

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.

I fully identify with this having been through it all myself I now am left with some memory issues which seem better now that my Dr has put me on Metformin to reduce my sugar.....wonder if its coincidence I am forever grateful to my family and the amazing medical care I received in Dunedin hospital NZ

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.

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. 🙂

Help me doctors don’t believe I have this disease

💗Its beautiful to see a families love grow stronger despite such adversity. Many are given up on.

I watch this and it only hits home how lucky I was!

Thank you for putting that together