Your Stories
Your Stories
Here, our members and volunteers share their stories and experiences of encephalitis.
If you are in any way affected by these stories please do get in touch with our support team.
Many of the stories and videos below were filmed as part of the My Brain and Me project which is proudly supported by the National Lottery Community Fund. The videos can also be viewed on our YouTube channel.
Share your story
If you would like to share your own story, please visit our Submit Your Story page.
These stories are incredibly valuable for others to read. They can help people, directly or indirectly affected, to understand more about encephalitis and deal feelings such as loneliness and isolation.
We usually ask for written stories with sub-headings relating to things such as diagnosis, treatment and ongoing recovery.
We ask that you do not name individuals or medical centers without their consent. Please use generic terms such as friend, parent or doctor.
If you have any questions please do get in touch.
Autoimmune Encephalitis Lived Experience - Aliya's Story
I quickly was diagnosed with bipolar 2 disorder and I had a new treatment plan, everyone knew I’d be okay. That was until my roommate found me seizing in my room; I was immediately sent to the hospital with uncontrollable seizures, transferred to another hospital, put under a medically-induced coma, was on a forced medical leave from school, and was ultimately flown back to Philadelphia.
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Epstein Barr Encephalitis - Alex's Story told by mum, Pennie
We got Alex to the Emergency Room. As the day progressed, Alex’s voice became higher and more shrill. When he was asked questions at the hospital he would seem confused and look at us to answer for him. A cat scan of his brain was done and he was given a lumbar puncture. His dad held him up for LP and he fell asleep during the procedure. We knew something was very wrong - who could fall asleep while getting a painful lumbar puncture?
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Autoimmune Encephalitis following Measles - Ailís' Story
I contracted encephalitis at five years of age. It started with measles, followed immediately by chickenpox and then encephalitis. I was ill for a long time, missed a lot of school and was cared for at home by my Mother (writes Ailís Ní Ríain)
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