Juana tells the story of her niece’s experience of Anti-NMDAR autoimmune encephalitis

Amber’s Early Symptoms

Amber, my niece, is 13 years old and living in the Philippines. She is an athlete, a badminton player of her school, and was due to be part of a big competition representing our province in March. But unfortunately, this thing happened so fast. January 6th, she was at her badminton training, one of her teammates came to her Mom and said Amber was so quiet and seems mad all the time. Also, we later found out from her coach that during that training, she had been confused and not following instructions. That night, at home, her mom noticed strange behaviour and started to wonder what was wrong. She asked Amber what the training and said ‘I don’t know because there was sound in my ears like voices’ so she did not understand what the coach was talking about at all. That night she could not sleep, she said it is like her tongue was being pulled away from her mouth. Her head felt heavy. She started to act different that night and the next day she started to become disoriented.

Her parents took her right away to the emergency room at private hospital in January 2026. They said she had a fever. Her personality changed, had hallucinations, she was very emotional, confused and wide awake since day one. They did computer tomography (CT) scan but not a lumbar puncture (LP). We decided to transfer her to a different hospital after I witness her first seizure, so she could be properly diagnosed and get faster treatment.

Diagnosis and Treatment

Amber was admitted January 11th in a medical centre in Quezon City. They did a lumbar puncture, and she was given steroids. She was diagnosed with Anti-NMDAR encephalitis with teratoma in her right ovary. They operated on January 20th to remove the two cysts. We were told that out of 128 patients of encephalitis at this hospital – my niece was the first patient with a teratoma. She had 6 sessions of plasma exchange which ended January 30^th. After her surgery she finally started to fall sleep on her own. She started to feel better, she ate and drank a lot of water. She started to talk normally even though she talked like younger than her age, her voice sounded like a baby. She became a happy kid, laughing or giggling. It became fun to talk to her, but we knew she was not fully recovered yet.

Recovery and Family Challenges

After 22 days, Amber was discharged on February 2nd. The doctors were amazed of her fast recovery.  She had a doctor appointment almost every week in February and every two weeks in March. She was due to have neuropsychology evaluation 2-3 months later. We are grateful that we transferred my niece to this medical centre because they treated her so well. My family are very thankful that my niece is back with us. The saddest part of this was that my Mom passed away 2 days after my niece was transferred to the medical centre in the city. My brother could not attend the funeral and burial because my sister in-law could not handle my niece alone when she was having an episode.

Learning About Autoimmune Encephalitis

One my niece’s doctor said that we should watch the movie Brain on Fire. And that’s when I started to do research on autoimmune encephalitis and how I found this website. I started to read more and collect information because I know it will help me and my family to understand and help my niece’s recovery. And to learn more, share awareness in the community, so we could help others who are going through same situation.

If you would like to read Brain on Fire, it can be found in our online shop.

Story published August 2026