I was a healthy 27 year old woman who loved paddled boarding and aerial circus prior to being diagnosed in November 2024 with Anti-NMDAR Autoimmune Encephalitis.

I was on a weekend away with my mother and partner in England and complained of sore ears. Later that night I took my first seizure and an ambulance was called!

My symptoms began suddenly, manifesting with seizures, manic psychotic episodes, hallucinations, agitation and oral facial dyskinesia.

I was admitted to hospital, spending 48 days in the Critical Care Department , followed by another 37 days in a Neurology ward and then followed by general ward for 7 days before being allowed back to my family home where I now receive 24 hour care from my parents.

Treatments

I was initially treated with heavy duty steroids. I then began IVIG and a week later a course (3 sessions) of PLEX (plasma exchange) and finally two doses of rituximab. All of this happened while I was on a ventilator having had a tracheotomy and continual treatment for dyskinesia.

Once I was discharged from hospital, I was taking 19 tablets throughout the day. These drugs help to control seizures, psychosis and heart rate.

My cognition, speech, fine and gross motor skills are slowly improving. I am receiving speech, physical and occupational therapy. I struggle with frustration and fatigue.

My advice would be to take any offers of help and be kind to yourself and keep smiling because it’s a tough and long journey.

Story published June 2025