Ella Rose talks about her lived experience of autoimmune encephalomyelitis (ADEM) which she had when she was just 8 years old.

Hi my name is Ella Rose and I am a survivor of autoimmune encephalomyelitis. Quite a mouthful I know!

It all started when I was 8 years old and I had just competed at a regional gymnastics competition in Western Australia. I’d come away with a gold medal and I was so excited!

About a week later when we returned back to our hometown, I started to develop flu like symptoms. My fever was extremely high and I was just overall very unwell. My mum took me up to the hospital where they put me on a drip assuming it was just a really nasty bug, but I wasn’t getting better. Eventually, the doctors were able to diagnose me with autoimmune meningitis.

I was flown in the royal flying doctors from my small town to Perth where I was admitted to a Children’s Hospital. I had a lumber puncture – which is a needle in your spine that draws fluid out that gets sent off for testing, and I was then diagnosed with encephalitis. Encephalitis is inflammation of the brain and spinal cord.

The treatment was long. It was a hard process, not only for me before my family, my two siblings were back in the small town that I grew up in, and I was down in a big city in a hospital bed. It was quite scary for me at the time I couldn’t do anything for myself. I couldn’t shower. I couldn’t use the bathroom by myself. I couldn’t walk without carrying around my drip. I had to get wheeled around in my wheelchair. I was connected to a drip almost the whole time, so it was weird having to walk around with a machine attached to me. I had many MRI scans that where so long and hard to stay still for along with the EEGs, blood test, fingerpricks and lumber punches. This is where my phobia of needles began. I still struggle with this daily!

I was put on steroids to help me recover. It was a very long process. The drugs that I was put on, made me really happy. My mum says I wouldn’t stop smiling, it was almost creepy, but eventually that stopped. Once I was released from the hospital we went back and I got home just in time for my ninth birthday. Every year, for the next two years, I had to get flown back to Perth to have a checkup and have an MRI scan and an EEG scan to ensure my brain was OK. I was left with brain scarring, also known as brain lesions, that I still have to this day and will have for the rest of my life. Another thing encephalitis has left me with is severe obsessive compulsive disorder (OCD). I’m currently on medication for my OCD and on for recovery. It’s a very long process, but I know things will get better. This is actually very common for people who have had something similar occur! Although my journey is certainly not over, I’m so grateful for all the people who have supported me and helped me through this time.

 

If you would like support with encephalitis, please do get in touch.

 

Published February 2025