Juliana: Anti-NMDAR Encephalitis Lived Experience
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- Опубликовано: 9 фев 2025
- Juliana shares her story at the Encephalitis International event, My Brain: My Story, in October 2022.
Juliana, from Miami, Florida, was diagnosed with anti-NMDAR encephalitis in 2014. Her illness has a huge impact on her life and those of her loved ones. Thankfully, she made a quick recovery through sheer determination and a loving support system.
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My son is in ICU rigth now.. he have encephalitis.. i need your prayers for my sons fast recovery.. dont know where to get money to pay the bills and medication.. but i know God will make a way..
🙏🏽🙏🏽🙏🏽
My daughter is finally home recovering from. I hope your son is ok ❤🙏🏼
Hello, my sister is currently coming out of the comatose state this illness caused her. I hope all is better with your son!
@@keniasegura6182same here my sister currently in ICU past 3 weeks
It is amazing you are helping others like us. I am almost a year with aNMDA.
I also feel your title a tragedy worth living is 🙌🏼🙌🏼🙌🏼🙌🏼
God bless you. You’re a great inspiration to us people who suffered Encephalitis. You’re doing so great. I’m very happy for you. Keep on doing what you’re doing. You’re just doing so great. Thanks for sharing your story.
Thank you so much for your kind words, Brittany
@@encephalitisinternational You’re very welcome
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.
Hi, I hope you are doing well! My sister went through something similar. Healthcare is very poor in the UK and they don't want to investigate properly. My sister most likely had some type of autoimmune encephalitis and was sectioned. It's been 3 months since it all started and now she is back at home. Her head still burns, and she can't sleep much. Some of the symptoms have naturally faded but her condition fluctuates.
I wanted to ask you about fluctuation of symptoms. Did you have autoimmune encephalitis for 2 years? How long did it take between the first symptoms and getting the right treatment? And did the symptoms fluctuate?
An amazing message! I really needed to hear this today 💜
That's awesome. I don't remember anything before I had my grand Mal seizure due to encephalitis.... now I have epilepsy as a result of the brain swelling. Great.
So sorry to hear this -please do reach out to our support team if we can help - support@encephalitis.info
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".
Do reach out to our support team if we can be of any help - support@encephalitis.info
Hi Juliana, can you share the name of the Doctors you see @ Jackson. We are living in Miami as well and I try to find my son Dx.. Thank you for sharing your story with us.
Hi Rosa!
Thank you for reaching out. Since it was almost 9 years ago, my neurologist no longer works in Miami. I saw Dr. Reuven Bromberg, MD but he is not based in Jackson. He helped my recovery immensely. I also saw Dr. Nicole Mavrides - Psychiatrist at UM HEALTH JACKSON & Dr. Susan Ireland - Neuropsychologist. All great doctors in Miami!
Best of luck !!!
My 21 year old daughter has been diagnosed with GAD65 autoimmune encephalitis. She has focal seizures. She's taking the IV steroids now. They want her to take Rituximab next. Can I ask if you took that? She/we are so scared.
Hi! Thank you for reaching out. I feel like every person is different, and everybody heals differently. So, I wouldn’t be able to tell you what is best for your daughter, but I definitely think you should talk to several doctors before you make a decision. At the end of the day neurologists tend to know best. Best of luck with everything!
Hello!
I had Rituximab infusions with Kaiser and since then I’m doing wonderful!
I am totally back to myself again 💕🙏🏾
So I would suggest taking those treatments if she can. Prayers for you, your daughter and your family.
Hi, you look great.I would like to know how long it took you to go back to school.???? My son has been in the same situation for a year and he has not recovered yet, it is better this way but it is very difficult.
Do reach out to our support team if we can be of any help - support@encephalitis.info
How does neuropsychology treat an autoimmune condition?
Thank you for your comment, T.A.A. You can learn more here: www.encephalitis.info/neuropsychological-assessment
my brother suffering from AE it’s been six months still seizures coming he has given plasma exchange ivig retuximab also.
So sorry to hear this. Please get in touch with our support team if you would like to chat. www.encephalitis.info/contact-our-helpline/
@ ok will reach you