Kristen started to experience symptoms of encephalitis while living away from her family and friends. Here, she shares her story.

 

My symptoms

In May of 2023 I started with a very high fever. I passed it off as normal; as I got sick very often, just had pneumonia a month prior. I work with young children which I believe weakened my immune system over the years. I’d only travelled out of the country eight months ago but was otherwise fine. After day 2, the fever wasn’t subsiding and came out in a red rash in my extremities, prompting me to go to a doctor. There I was told I had measles (which was a misdiagnosis as I found out later) and was told to stay on my fever medication. However, the fever wasn’t subsiding and I was now quarantined at home, progressively getting worse. I lost my appetite, had diarrhoea, extreme fatigue, photosensitivity, vomiting and later ear pain, red eyes and psychosis. I live on my own in a different country so no one was able to see it. I kept in contact with my mother sending her pictures and updating her on how I felt. I sent her a picture of my “red” eye not knowing until after my recovery that my eye was physically bulging out of my head.

Start of diagnosis

I followed up with my doctor, as instructed, as my rashes were gone by the second day, but other symptoms had started. I was then put on an antibiotic (Augmentin) which I’d only taken it for a day when suddenly I stopped responding to everyone’s messages and started declining calls (which is very unusual for me). This is when my parents contacted someone to check on me. I was in total psychosis, asking a stranger at my door for ice cream. An ambulance was called which I refused to go with until another was called shortly after.

I arrived in the emergency department where tests were done and I was kept in isolation until they figured out from the spinal tap (lumbar puncture) that I had meningitis, plus a few other common viruses working at the same time which I was given treatment for. My family flew out from the UK and South Africa to be at my bedside.

Seizures

I was transferred to a ward and was still lively, making jokes but clearly out of it, unable to walk and take care of myself. On the 4th day I suddenly declined severely, they couldn’t figure out what exactly it was as I wasn’t responding to the medication and I was clearly now getting worse. I became unresponsive and eventually had my first known seizure. This was what prompted my transfer to the ICU. I was sedated and ventilated and transferred to a different hospital for further testing. I was now in a coma, and my family and friends were preparing for the worst. I had been extubated multiple times without success and was not responding in my neurological exams.

Treatment

After almost 2 weeks, I was given Immunoglobulin and finally opened my eyes. However, was still unresponsive, I didn’t respond to anyone really, only blankly staring into the ceiling. As I became stronger I was again transferred to another ward where I would start physical therapy. I tried very hard for a few days to get back on my feet, steps that felt so impossible to make. The doctors had already said I may not be able to walk again, and live a normal life and my family would need to take me home to care for me. However, I progressed and was now aware of my mum’s name, and was able to read and write contrasting to my prior scribbles and other heart-breaking responses. I began speech therapy, physical therapy and occupational therapy. At this point I became aware that something happened to me. I had been so lost and I don’t think I knew anything at any prior point after I’d woken up. I began asking questions and became more aware of what had happened, although I had no memory since 3 days before being taken to the hospital.

Start of recovery

Once discharged I was put on anti-epileptics and miraculously began my normal life at home, I was able to walk, shower and make meals on my own almost as if nothing happened. I later went back to work but struggled as I didn’t have my voice back, was very sensitive to all the noises and terrified of germs. On some bad days I was very weak on my feet. I found Encephalitis International during my journey of trying to find people that could understand me. Throughout my journey, I felt so misunderstood and alone. Although most of the stories didn’t sound as drastic, I found so much comfort in finding my people. 1.5 years later, I am on higher doses of anti epileptics, struggling from PTSD and depression.

My family was so affected mentally seeing me in that state and I feel extremely guilty for that. I am doing much better. I do have my bad days but on my good days I still think back and wonder did it really happen??  I have been wanting to share my story to inspire, I was fuelled by doubts and odds against me but I persisted and I am here today. It has taken me on a spiritual  and physical journey to heal myself, not forgetting the constant doctor appointments to go and check all the strange things that occur suddenly. I am studying my body and anything that feels unnatural to how I know it to be. Grateful for my family and the people that supported me and grateful to be here and share my story of the great fight!

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Story Published May 2025