My name is Regináe and I was 4 when I was diagnosed with Acute Disseminated Encephalomyelitis (ADEM)

 

My dad noticed that I was acting strange and acting like I was possessed, then all of a sudden I started shaking constantly and couldn’t stop. My parents then admitted me to hospital and they didn’t know what was wrong with me. Then, when they admitted me to the ward, they discovered that I had an infection but my immune system was to weak and it transferred to attacking my brain. At this time it was really scary for me as I had constant seizures, and I was in a coma for 3 days – which was really scary. The doctors thought I wouldn’t make it and they told my parents that it was a possibility that I wouldn’t make it.  I was in the hospital for months. I couldn’t eat, move my hands, talk or anything. Both of my parents supported me throughout this difficult time and my physical therapist as she usually gifted me a toy or something every time my mobility improved which would motivate me to push even more.

When I started to recover, I had to learn how to do everything again. I got glasses as encephalitis had damaged the back of my eye. Whilst recovering and going back to primary school, I always fell during playtime because encephalitis ruined my balanced as well. School work was a massive challenge with me as encephalitis ruined my memory so it was a bit hard for me to learn stuff as the other kids within school would learn stuff at a faster pace than I would.  Transferring to secondary school was a big step for me as I struggle with reading and writing but my school offered me support which made me feel like I wasn’t the odd one out.

Now, I’m 19 and the side effects that I have to deal with include wearing glasses and dyslexia. But everyday I am grateful that I am healthy and alive.

Be kind to yourself as recovery takes time and progress isn’t always a straight line.

 

Please contact us if you would like to talk about your experience with encephalitis. We have an online peer support group for young people aged 18-25.

Story published June 2025