‘Like I was losing my mind’: Student with rare ‘brain on fire’ overcomes coma, memory loss to graduate university

TORONTO — An Ontario student has graduated from university despite suffering from a disease commonly known as “brain on fire” that put her in a five-month coma and caused near total memory loss during her second year of school.

When Carisse Samuel learned in 2016 that she had anti-NMDA receptor encephalitis, a rare autoimmune disease that attacks the brain, the diagnosis halted her studies at the University of Toronto.

“I had just gotten my license, my first car, I was living on my own, and then shortly before midterms and exams, I started noticing gaps in my memory. One day, it was a Saturday, and I couldn’t remember anything that I did that day when I got home,” Samuel explained in an interview with CTV’s Your Morning on Tuesday.

“I felt like I was losing my mind,” she added.

Samuel says she wound up in a hospital emergency room after confiding in a family friend about her fading memory. Doctors told Samuel she was likely just anxious about school exams.

However, the next few days were a fog for Samuel. She says she returned home to Innisfil, Ont. and eventually stopped recognizing her mom.

While at home, she started experiencing seizures and was taken back to the hospital. She says doctors placed her in a medically induced coma to prevent her brain from swelling before diagnosing her with anti-NMDA receptor encephalitis.

The disease is commonly caused by teratomas, a rare type of tumour. Samuel said the tumours causing her brain injury were in her ovaries and doctors made the decision to remove them. Samuel was comatose for five months.

Samuel does not remember initially waking from the coma, but has been told by family that she didn’t recognize her mom or her friends.

Samuel says she does remember waking up in a room a few weeks later, her body connected to different machines, but certain memories were still missing from her mind.

“I could barely even say my name. The doctor asked me what year it was and I said, ‘2016,’ and he was like ‘No, guess again,’ It was 2017 at that point,” Samuel said.

She explained that she had to re-learn basic tasks.

“Things like eating, feeding myself, how to walk, how to speak, how to read and write. I had to learn everything again. It was like being a baby,” Samuel said.

During her rehabilitation, Samuel said she also took up painting and photography again — two of her passions before her brain injury.

“[Art] is my way of expression. I was afraid initially that I might have lost it, but through rehab I started slowly to do little creative projects and… Now I’m able to do art and photography again,” Samuel said.

Samuel completed her rehab in April 2018 and decided to slowly return to school, despite doctor’s recommending she take a few years off.

Samuel said she wanted to get back to a “normal life.”

“Graduating was such a big goal of mine, and I wanted to walk across that stage. So that kind of lit a fire within me, it gave me a goal to reach. It really helped me in my opinion with my recovery because it gave me something to fight for and something to live for,” she said.

Samuel finally graduated from the University of Toronto with a degree in digital enterprise management on Saturday.

Samuel credits the university’s accessibility services, her patience, and supportive professors with helping her manage the workload by providing accommodations such as extra time to complete assignments and allowing her to take 15-minute breaks from class.

While Samuel is still missing some memories — she says she can’t remember anything between Nov. 2016 and April 2017 — she is now looking to her future.

Samuel says she is currently apply to master’s programs in business technology and is also looking for a job in digital marketing.

Despite the missing memories, Samuel said she has almost fully recovered with her doctors calling it a “miracle.”

“This journey has shown me the strength that I have — that I didn’t know I had before. Going through this, I’ve grown so much, and I know that nothing can stop me from achieving my goal and dreams,” she said.

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