anti-NMDAr AE Warrior Shares her Story

gene tabitha anji
Feb 15, 2018
3 min read

Catherine - One Month prior to anti-NMDAr encephalitis

(This photograph of Catherine was taken exactly one month prior to her diagnosis. She says: “In this picture you can see how healthy I was….I never saw it coming!”)

Catherine’s Story ~

In 2015 I was a Registered dietitian pursuing a combined Civil and Common law degree. After completing my first year in law, I began to experience a variety of symptoms. I started feeling dizzy. I had hallucinations. My speech became slurred and I had trouble finding simple words and remembering words. I could no longer distinguish reality from my dreams. When I got to the hospital I was admitted. After a week without a diagnosis, the doctors felt there was nothing to be concerned about and I was discharged to go home.

Providence intervened. At the exact moment I was being discharged from the hospital, I started to have seizures! The medical staff recognized immediately that something was very wrong. I underwent a battery of tests, all of which came back negative. A resident, Dr. Hayet Boudjani, started to investigate my case and ordered a lumbar puncture. I had been in the hospital for 2 weeks when I received my diagnosis, anti-NMDAr Autoimmune Encephalitis.

Treatment began with 5 days of Intravenous immunoglobulin (IVIG). I was discharged to home 3 days after that therapy was completed. Even though I was a dietitian and fully aware of what I needed to do to maintain good dietary health, I experienced a 15-pound weight loss. It was a direct result of the disease. Feeling exhausted and mentally drained, I took 2 months off. I began my rehabilitation. I had to build up my muscles again. I worked on improving my cognitive challenges, and began to try to start reading again. (My attempts at crossword puzzles while in hospital was my personal nightmare.)

After 2 months, I started my second year in law school. Yes, I did finally graduate with my Law degree. Relying on help from my school's staff and accommodations for my new challenges (my new reality), I succeeded. I never considered myself incapable of succeeding given my new challenges. I believe my attitude was key to my success.

Currently, I am taking my Law Society exam in Québec and finishing my Master's Degree on the Impact of Artificial intelligence in Canadian Health Law. Over the past 2 years, I have been tested twice to rule out the possibility of an ovarian teratoma occurring. I carefully monitor myself for any signs or symptoms that might signal a relapse. Mostly, I live my life. I continue to reach for my dreams. I am an AE Warrior in recovery and hope my story inspires others.

*Although Catherine's case of anti-NMDAr encephalitis is notably more mild than other such cases, as IVIG recovered her to baseline. It was a long recuperation and rehabilitation to re-learn what she had lost and re-train the brain from injury. Her determination is inspiring.

World Encephalitis Day is February 22nd. Show your support and raise awareness of Autoimmune Encephalitis by using this Face Book profile picture from now until WED. More patients are getting correctly diagnosed as a direct result of increased awareness.

"Walk a Mile in My Shoes" is Int'l AE Society's 2018 Awareness Video for World Encephalitis Day. Our goal is to have 1,000 views by February 22nd. Share, Tweet and E-mail this video out to raise awareness for Autoimmune Encephalitis:)

Int’l Autoimmune Encephalitis Society is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, Int’l AE Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones on Face Book, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.