Anti-NMDAR Encephalitis Lived Experience - Rachael M's Story

Rachael's story of her anti-NMDAR encephalitis experience from the acute stage to recovery.

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Influenza Encephalitis Lived Experience- Audrey B's Story

Audrey's mum talks about how Audrey had encephalitis when she was just 4 years old and shares her experience of the flu like symptoms.

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Herpes Simplex Encephalitis Lived Experience- Tim's Story

Tim's lived experience of herpes simplex encephalitis from initial symptoms to recovery.

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My Brain and Medicine - Cleveland, US

Please note this is an FREE in-person event for patients and their families.  22nd July 2024, 13.00-18.00 Venue: Cleveland Clinic Administrative Campus Building 4 3175 Science Park Drive Beachwood, OH 44122 United States PROGRAMME 13.00- 13.30                Registration 13.30 – 13.35               Welcome address […]

22 July 2024
Cleveland Clinic Administrative Campus Building 4, 3175 Science Park Drive, Beachwood, OH 44122
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Herpes Simplex Encephalitis Lived Experience - Richard's Story

Richard, a conductor from the USA, talks about how he has had to embrace new emotions as part of his ongoing recovery from Herpes Simplex Virus Encephalitis.

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Maddy's Story

Maddy is a 21-year-old who was diagnosed with Hashimoto’s encephalitis at the age of 16. Maddy speaks of her experience with her disease and the impact it hass had on her life going through high school and college. She encourages people to ‘defy expectations’ in life by letting go of what we think life should […]

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Macy's Story

HOW IT STARTED On July 3, 2020 I began my day with a 10-mile run in the Northeast Georgia neighborhood surrounding my childhood home. I followed with a smoothie, took my labrador retriever for a walk, responded to work emails, FaceTimed my partner across the pond, and celebrated an early Independence Day with an intimate […]

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LGi1 Autoimmune Encephalitis Lived Experience - Lisa's Story

Lisa talks about her lived experience of autoimmune encephalitis which, in her case, cased seizures, mobility issues, problems with cognitive function such as short term memory loss and aphasia.

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Herpes Simplex Encephalitis Lived Experience - Larry's Story

Larry talks about his lived experience of herpes simplex virus encephalitis. Having recently moved to Washington DC he struggled to initially get help with a diagnosis for his symptoms.

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Juliana's Story

It all started in the first week of my freshman year of high school when I was only 14 years old. I began to get very anxious all the time, I would have fuzzy thoughts and I was not able to concentrate during class. I thought this was all part of the nerve-wreck of starting […]

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Jackie's Story

The following is an article that Jackie wrote for The Gavel, the quarterly magazine of the North Dakota State Bar Association. Jackie lives in Bismarck, North Dakota.   Lawyers have two great fears in life: 1) missing a deadline and 2) getting sick.  Missing a deadline is scary and keeps us awake at night, but […]

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Gavin's Story

This is the story of Gavin Lingenfelter, the strongest person I know. If you look at Gavin, you see a very handsome young man, who looks to have it all together. What you don’t see is the struggle inside that he deals with daily. Gavin was born a healthy 7lb, 7oz, 21in long, baby boy. […]

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Gary's Story

I lived in Detroit, Michigan, in February 1950. I was eight years old and in the third grade. I contracted the measles, which transitioned into encephalitis. The only symptom I had suggesting that it was encephalitis was I that could not stay awake. My mother telephoned my doctor and he said for her to call […]

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Gabe's Story

Every week in Nashville, Andy Gullahorn goes for a walk and meets up with Gabe Scott, and they give each other a high five. This small ritual became even more important when Gabe became poorly with encephalitis.     Read more about their story in The Atlantic The following video is of Andy and Gabe performing Small […]

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Audrey's story

Audrey writes about the early signs of her illness as well as the long term affects encephalitis has had on her life after being diagnosed at age 58.

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Barbara's Story

Although I feel that my life has been affected by many events, even small ones, one specific event had a major effect on the direction my life took at the time. This event occurred when I came down with measles encephalitis at the age of six.

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Aurelio's Story

My father, Aurelio, was diagnosed with HSV-1 Encephalitis in October 2020. He does not remember much of what happened to him except vivid dreams and hallucinations, so I’m here to tell his story and spread awareness on his behalf.  

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Ana's Story

Ana was a happy 10-year-old just finishing the 4th grade when she came down with flu-like symptoms

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Hannah W's story

Hannah from North Carolina was diagnosed with Anti NMDAR encephalitis in the summer of 2021. She writes about her experience in hospital and her return to university.

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Aurelio's story

Aurelia became poorly with HSV encephalitis in 2020. His daughter, AnnaMaria, shares his story.

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Aliya's Story

Aliya was a 20-year-old college junior in Massachusetts, USA, when she was diagnosed with autoimmune encephalitis in December, 2019.

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Alex's Story

Alex had just started studying music at a university in Nashville when he became poorly with Epstein-Barr viral encephalitis. This is his story.

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