51 days in a coma, then recovery from autoimmune encephalitis
August 10, 2016
It has been almost 2 years since Eman was diagnosed with AE. She spent 51 days in a coma. Now at age 21, she has recovered and is attending college. She shares her story below.
Before my 18th birthday I was spending the holidays in Spain. We were on the island of Mallorca. Towards the end of our trip my brother and father noticed that I started acting strangely: aggressive then passive; happy then sad; crying for no reason. Then I started claiming I was seeing big ants. I’d walk in the bathroom and walk out dry, claiming I had just showered. I’d be talking to my mom on Skype telling her that I could not find my father and brother but they were in the room with me. Soon after that, I was talking with my mom on Skype and stared back at her with no emotion; nothing. She was alarmed and told my brother to shake me and see what was going on. There was no reaction.
After rushing me to the emergency room I became increasingly aggressive. I pushed everyone away including my father, doctors, and nurses. I wanted to take my clothes off, and sleep on the floor. The doctors thought I was on drugs, and kept asking my family if I had taken anything. That same day my mom flew to Spain in her pajamas, and I believe I wouldn’t have recovered if it were not for her. I deteriorated further and was induced into a coma for 51 days. They tried many different treatments including a plasmapheresis transfer, but it was the approval for the Rituximab treatment that was hardest on my parents. After hearing about the side effects, my father was against it, but my mother ultimately made the choice to proceed. As if a miracle, shortly thereafter my involuntary movements decreased and I started getting better. It was however, what I like to call my “halfway” point because when I woke up I was unable to speak, eat, drink, or walk. I was a newborn in a grownup body.
During rehabilitation I began to speak again and re-learn simple tasks like drinking liquids. Thankfully on October 25th, 2014, I was discharged from the hospital, however I stayed for another month of rehabilitation. Both my long-term and short-term memory were affected by my illness – short-term more than long-term. For example, I would ask a question and ask it again after a couple of seconds. My mother continued to help me with rehabilitation. She taught me subjects I had learned in grade school, but I still found them difficult. I was angry at myself for not remembering such things.
Over time I started feeling better and increasingly understood more and more school subjects – I started to become me again. I worked in my previous school where the principal and a dear family friend let me attend classes. I even volunteered with preschoolers once I progressed in my healing.
After two years I am back in university, going on my 5th semester. I couldn’t feel any better. My memory has returned and I “act my age” which is funny. I am so thankful for my mother and the many medical professionals that cared for me, and didn’t give up on me. I am thankful for life! I hope my story will give hope to others.
