Anti-NMDAR Encephalitis Lived Experience – Kelly’s Story

Please note: It is very rare for someone to have several relapses of encephalitis. If you have any concerns about your own health, please contact our support team.

My name is Kelly and I have had encephalitis four times and meningitis once.

I had meningococcal encephalitis when I was 7 months old. I then had encephalitis when I was seven years old, I was in the hospital for about eight weeks. When I was sixteen, I then got encephalitis again and had a headache for about a month and my doctors did not do anything for me. One day I passed out and went to the hospital for a test, and it came back with swelling on the right side of my brain which meant I lost my speech movement memory. I was in King’s College hospital for eight weeks. When I was allowed home, I had speech and language to help me get better. These brain infections made going through school hard due to memory problems. I am also a little bit deaf in one of my ears which made it very difficult to listen.

I then got Anti-NMDAR encephalitis when I was twenty-seven. This time I got headaches again, but I was also very confused and suffering from memory loss and psychosis. I went to the hospital, and they ended up putting me in a mental hospital for two months because of my symptoms. My family knew what was making me ill but the nurses in the mental hospital did not listen to them. I was having medication that I did not need. One day a doctor took a blood test, and it came back that I had NMDA encephalitis. Finally, I was moved to a hospital for the right treatment. I had a steroid plasma exchange and rituximab, but it still took me two years to get well again.

I then got Anti-NMDAR encephalitis again in November 2021. Again, I was getting very tired, having headaches and my speech was getting worse. I could not feel the right side of my body, my fingers were locking up all the time, I could not move my neck, and started to have fits again. I saw a neurological doctor and had bloods done again. The results came back positive for Anti-NMDAR encephalitis, so I was taken to hospital for treatment. I was in the hospital for four weeks and got home the week just before Christmas. I am still on medication now and my memory is still not great.

I have a lovely partner and four lovely children and encephalitis has affected all of us in all different ways. Emotionally encephalitis has changed the person I am as I have mood swings and I get tired all the time. I also suffer from bad anxiety, and I have days where I am just crying for no reason, I worry about how it affects my children and their mental health. My seven-year-old daughter has play therapy at school as she saw the effects my encephalitis had on me last year. She now has nightmares about me having seizures. All my children deal with it in their own way. My four-year-old often says “mummy doctor” and “mummy dead” when she sees me ill. While my boys do not really say much. We all have lots of family support, but I just wish I were like other people. I get scared every time I have a headache as I think it is the encephalitis again.

Recently, I have had a few tests done up at King’s College. I had a PET scan as well as a memory test to see how much of my brain had been affected from all the times, I had encephalitis. I am currently taking Rituximab and have my second dose next week. My neuro doctor was shocked when we first met as she had never heard of anyone with the same experience of encephalitis, as November 2021 was the fourth time, I had encephalitis.

I am lucky to be here, and I would not wish for anyone to get encephalitis. It is horrible and it affects you in many diverse ways. I am hoping one day they will find out why I have had it so many times and be able to treat it so that I do not have to worry all the time.

When I tell people what I have, they say they have never heard of it before, so I must explain. People say I look fine, but people cannot see inside your body and in your brain. Encephalitis is rare and can be serious and encephalitis is a hidden disability that no one can see. The pain you have from encephalitis is horrible and scary.

Find more information on the different types of encephalitis here.