Your Stories
Share your story
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.
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.
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. Funding has also been provided by GSK towards developing our My Brain and Me project. The videos can also be viewed on our YouTube channel.
If you have any questions please do get in touch.
Tick-borne encephalitis - Bill's story
Alarming symptoms hit me over a couple of days, a horror show of unbearable headache, fatigue, vision difficulties and loss of balance that put me in hospital where I had multiple intravenous drug infusions, blood tests, scans and a cerebro spinal fluid (CSF) sampling. I somehow failed to absorb the messages about potential outcomes and relaxed in the feeling the hospital staff were doing everything possible to sort me out. I credit this ignorance and confidence with why I didn't express the post-traumatic stress disorder (PTSD) that is not unusual after TBE hospitalisation. That's not to deny this is an emotional journey and I went to some dark places under my own steam. I cried a lot in hospital, sometimes in fear, sometimes in pain and also in gratitude for the efforts of staff and messages from family and friends. Fortunately, the alarming nightmares of being stalked by a giant melanistic boa constrictor in a variety of scenarios have faded. Nevertheless, with a lot of my time spent at home alone, it still gets a bit dusty particularly reading other experiences of TBE or thinking about friends facing difficult health challenges.
Read Story
Enterovirus Encephalitis - Erin's Story
I had a seizure while in the coma which made things worse. My mum recalls the doctors saying I was "extremely unwell" which she knew from watching medic shows on TV was code for "it's not looking good". When I woke up from my coma I recall saying "where's my husband, I want my husband". No-one else was that important at that moment. I was incredibly distressed and confused. I couldn't move. Couldn't sit up or even roll over in bed. When my husband came and visited me he handed me phone which I immediately dropped and was convinced he'd filled my phone case with bricks.
Read Story
Rhombencephalitis - Elis' Story
Eventually, doctors agreed further tests were needed. He underwent an MRI scan, a lumbar puncture, and numerous other investigations. On February 23rd, we finally received the diagnosis: Rhombencephalitis - inflammation of the brain. By that point, our son was critically unwell. He slept almost continuously for three days and had lost both speech and mobility. We were faced with enormous uncertainty and fear, not knowing what the outcome would be.
Read Story
Herpes Simplex Virus Encephalitis - Lucy's Story
I sat down and got hit with a horrid sickly feeling right at the pit of my stomach. Everything hit so suddenly when I was in the shower. I felt incredibly dizzy, I tried to shout for help, but nothing came out. My grandad heard heavy, laboured breathing, it was me. My younger sister found me seizing on the shower floor, gasping for air as my right lung had collapsed because my head was directly under the shower head. An ambulance was called, and I was taken to hospital.
Read Story
Meningoencephalitis - Cade's Story
In June 2024, Cade fell suddenly and severely ill. He had shown no signs of being unwell until one day, out of nowhere, he started vomiting, developed a headache and fever, and quickly became confused and disoriented. His parents rushed him to hospital, where doctors soon diagnosed him with meningitis. But this was only the beginning.
Read Story
Autoimmune Encephalitis - Maria's Story
The next morning, I woke up with a fever. The only thing that brought it down was paracetamol. Without it, it was constant torment: my head felt like it was on fire, I couldn’t walk properly, I was staggering. I wasn’t eating, I was dehydrating. Only IV saline and intravenous paracetamol helped. The relief lasted only as long as the medication’s effect. After a few days, I was taken to the hospital by ambulance: extremely high fever, difficulty speaking, unstable walking. Yet, after the tests, I was sent home. My vital signs were normal. They told me it was probably a bacterial infection and prescribed antibiotics.
Read Story
Herpes Simplex Virus Encephalitis - Daniel's Story
In 2017, I was young, fit, and full of energy. I worked as a primary school teacher and performed on many stages as the singer of a reggae and ska band. Life felt wide open. I had no limitations, no serious illnesses, and creativity flowed easily—writing songs, playing piano, editing videos, building things. Everything seemed to be unfolding exactly as planned, with a lightness I still miss today.
Read Story
Autoimmune Anti-NMDAR Encephalitis - Ashley's Story
My battle with Anti-NMDAR encephalitis began in late June 2023, when I was 29. My memories from that time are blurry, something many people with this diagnosis can relate to. It started at work. I was unusually anxious about a presentation and hadn’t slept for nearly 48 hours. As the anxiety escalated over the next […]
Read Story
Acute Disseminated Encephalomyelitis (ADEM) - Vittoria's Story
Vittoria was diagnosed with Acute Disseminated Encephalomyelitis (ADEM) in Italy in 2011. On August 5, 2011, aged 42, I felt a sharp pain in my lower right back, but I didn’t worry about it because I thought it was premenstrual pain. On August 7, I suddenly fell for no reason and felt dizzy. On August […]
Read Story
VZV Encephalitis - Siw-Iren's Story - English Translation
I was taken directly to the emergency department. I remember being frightened—I understood that this was very serious. I knew I had been right all week! I had meningitis, but no one except my manual therapist had taken me seriously. In the medical notes from the emergency department, it states that I was very confused and restless. Clearly cognitively affected, with expressive aphasia. I remember wanting to call my son, and I tried to ask the person looking after me if they could get my phone from my jacket. All I managed to say was “there, there, there” while pointing at my jacket, repeating my son’s name. It was horrific being unable to speak while partly understanding the seriousness of the situation.
Read Story
VZV Encephalitis - Siw-Iren's Story - Norwegian version
Mitt navn er Siw-Iren Høgås, jeg er 50 år og har en sønn på 24. Jeg er utdannet sykepleier fra 1999. I oktober 2017 ble jeg rammet av varicella encephalitt. Har jobbet som leder ved ulike kommunale sykehjem i ca 15 år og vært assisterende avdelingsleder ved medisinsk avdeling i sykehus i 5 år. Jeg […]
Read Story
St Louis Encephalitis - Jennifer's Story
My encephalitis story begins in July of 2023, at the “end” of my cancer story. By the middle of August I was in complete remission from stage-four lymphoma, done with chemotherapy, and was informed that my immune system was functionally recovered from the chemo drugs. I doggedly focused on my recovery, gradually increasing my stamina, hiking, sailing, celebrating. I felt well enough to return to work, and even booked a show or two as a traveling folk singer and songwriter. Life was getting back to normal. Three months later, in the last week of October I came down with a sudden severe headache. My wife drove me to the hospital where I was examined and sent home with instructions to rest, and come back if things got worse.
Read Story
Autoimmune Encephalitis - Shiloh's Story
Before her illness, Shiloh loved driving, racing, fitness, nature, friends, and work. In 2022, her life changed dramatically as worsening symptoms including headaches, hallucinations, memory loss, seizures, and physical complications which led to a diagnosis of autoimmune encephalitis and a long, intensive hospital stay. Her recovery required ICU-level care at home and immense emotional, physical, and financial support from her family and community. Today, Shiloh continues to heal and has regained independence, with her family reflecting on the power of faith, resilience, love, and positivity throughout their ongoing journey.
Read Story
LGi1 Autoimmune Encephalitis - Graeme's Story
Graeme shares his lived experience of LGi1 autoimmune encephalitis. Graeme shares his experience of developing sudden, involuntary spasms in early 2022 that gradually worsened and disrupted his daily life. Despite repeated medical consultations, his symptoms were misdiagnosed or overlooked for nearly two years. The episodes, later identified as dystonic seizures, were triggered by stress, fatigue, and everyday activities.
Read Story
Herpes Simplex Virus Encephalitis - Adey's Story
What came next was a horror story and the experience of physical, mental and emotional torture. My symptoms intensified. Confusion, mental fog, extreme fatigue, severe headache, non stop cyclical vomiting, unbearable abdominal pain, my throat inflamed now unable to swallow my saliva without intense burning, and excruciating pain with touch that ran through my body like fire when sensory neurons/pathways were glitched (hyperesthesia/allodynia).
Read Story
Acute Disseminated Encephalomyelitis (ADEM) - Rosie's Story
Rosie shares her story of growing up after developing Acute Disseminated Encephalomyelitis (ADEM) at the age of six. After suddenly collapsing at school and spending time in intensive care, she faced significant physical challenges, particularly with balance, strength, and walking. Through rehabilitation, family support, and patient-centered care, Rosie gradually regained mobility and confidence.
Read Story
Mumps Encephalitis Lived Experience - Sandeep's Story
Sandeep shares his experience of surviving mumps encephalitis at the age of eight and the lifelong impact it has had on his health and wellbeing. After a sudden and severe illness that left him hospitalised, unable to speak or walk, Sandeep faced a long and difficult recovery marked by physical, cognitive, and emotional challenges.
Read Story
Autoimmune Encephalitis Associated with MOG Antibodies - Dara's Story
My symptoms began in late July of 2021 and I was hospitalized in September of 2021. I was initially misdiagnosed with “unspecified meningitis” because they could not pin down the exact cause, being that MOGAD is very rare. I was treated for bacterial, viral and fungal meningitis at the hospital. Luckily, part of that treatment was IV steroids, which likely saved my life. I was then sent home with oral steroids, antibiotics and anti-fungal medications. I laid in bed for months until I went blind.
Read Story
Herpes Simplex Encephalitis - Sanjay's Story
All was well, on 3rd August 2019, until it wasn’t. My father, out of the blue, started having a headache in the evening. He got checked from his aunt (who is a doctor), and she suggested that we take him to the hospital in our hometown, Udaipur (India), as he had started stuttering. Upon reaching the hospital, his brain’s MRI was conducted and my father was admitted in the ICU. Over the course of the next few days, my father’s health deteriorated. He felt feverish, started drooling and passed urine.
Read Story
Measles Encephalitis - Renee's Story
I collapsed. I had fallen into a coma. I was rushed to the hospital by ambulance and the doctor told my mother that I would most likely be a vegetable for the rest of my life. If I survived at all. There I was lying on a trolley in a coma but I saw everything. The next thing I remember was being moved through a long hall into a dark room with two nurses and a surgeon looming over me sticking a needle into my lower spine. Still in a coma. I travelled through a long tunnel at the end of which was a bright light and then back again as one of the nurses stroked my hair.
Read Story
Acute Disseminated Encephalomyelitis (ADEM) - Anji's Story
I awoke and intermittently struggled to move my right leg and had to really think about how to swallow, kind of like when you have tonsillitis and you are preparing for the razor blade feeling. I was staying with friends who thought I was having a stroke and took me to hospital for assessment. Things continued to deteriorate as the day went on and early hours of the morning I could no longer walk, talk, or move my right arm. Panic set in. Then I remember being transferred to another hospital by ambulance at approximately 2am. I was in and out of consciousness but remember the ambulance man asking me questions and I remember thinking why? I can't answer you so just stop! When I got to the hospital my consultant was there waiting. From here I remember very little for the best part of a week while they ran every test known to man twice! Every day the consultant would assess me to see if I needed a high dependency unit.
Read Story
Herpes Simplex Virus Encephalitis - Axyl's Story
After another 24 hours with no signs of progress and his fever climbing beyond what ibuprofen and Tylenol could manage, we rushed him to the emergency room. There, he was diagnosed with rhinovirus and sent home with instructions to let the virus run its course. We were told that fevers could last up to 10 days, but deep down, something felt terribly wrong. As the days passed, Axyl lost nearly 10 pounds in just 12 days, and his condition grew increasingly alarming. He refused to eat, became extremely malnourished, and started hallucinating. My once energetic boy was now having staring spells, violent outbursts, and calling his brother “Mom.” His behavior was completely out of character.
Read Story
Autoimmune Encephalitis Lived Experience - A mother's story
On arrival he was quickly admitted with suspected meningitis and started on IV antibiotics. The next couple of days were a bit of a blur. He tested positive for Strep A and a virus, so was also started on antivirals too. His lumbar puncture was thankfully negative for meningitis so we were hopeful it was just a couple of nasty bugs which had wiped him out and he would start to improve. And in many ways, he did seem to improve, he was less agitated and even trying to eat, but at the same time he was growing weaker, he lost control of his bladder, and we couldn't get him to talk.
Read Story
Acute Disseminated Encephalomyelitis (ADEM) - Madison's Story
I started having dizziness, headaches and blurry vision but I was dismissed as being fine. I began getting paranoid and hallucinating. I was typing messages that were just scribbled letters. Within the next couple of days, I was alone in a house, dog sitting. I fell asleep and slept passed my alarm but eventually woke up and felt even more confused. Nothing that was familiar looked familiar and nothing made sense. I had to meet my mom somewhere, so I got in the driver’s seat forgetting my phone. The car looked like it made no sense. I remember being confused in the driveway about the gears and about how to drive, but somehow, I did it although I don’t remember much of the drive.
Read Story