Healthy Living: “My brain was dying,” Local woman shares her story of recovering from a rare autoimmune disease
ANCHORAGE, Alaska (KTUU) - Imagine going from having all of the energy in the world to a catatonic state. In this week’s Healthy Living, you hear the story of a local woman, who by her account, is only the second patient in the city of Anchorage to be diagnosed with a rare autoimmune disease.
Rewind three years ago to when Brittany Kuzma was in the hospital. Video footage provided to Alaska’s News Source shows her in a catatonic state. Her mom nudges her chest calling her name, ”Brittany, Brittany, Brittany.” No response. A scary scene for any parent as she continues to call her daughter’s name, trying to wake her up.
“So I have Anti-NMDAR encephalitis, so what that is, is the body creates antibodies that attack the NMDA receptors in the brain, so that’s the things that make you function,” said Kuzma.
Kuzma started to lose her motor functions. Things like brushing her teeth and hair became hard. She was hearing things and hallucinating.
“I ended up going to the emergency room and they were treating me as though I had psychotic issues,” she said.
At the time, Kuzma was treated in the mental health unit and placed on medication because the disorder includes a range of psychiatric symptoms. She kept having seizures and eventually lost consciousness.
“At that moment that was my last memory for two and a half months. I became hypothermic you know within my own body, so my brain was dying,” added Kuzma.
She said doctors couldn’t understand why she wasn’t getting better. The neurologic disease was still fairly new, only having been first identified in 2007 by a doctor at the University of Pennsylvania.
Kuzma’s brain was essentially attacking itself. Just like New York Post reporter, Susannah Cahalan who suffered from the same disease wrote a book about it and eventually was turned into a movie on NETFLIX in 2016.
“My experience was very similar and everyone’s case is different,” said Kuzma.
In Kuzma’s case, it was a doctor who just learned of the disorder that ultimately led to them finding a teratoma on her ovary and eventually back on the road to recovery.
“So she was able to help diagnose and kind of get me going in the right direction and I will forever be grateful for her. Without her, I’m not sure I’d be sitting here talking to you today.”
Kuzma’s come a long way in her 3-year recovery but said the person she was before her hospital stay is gone. I asked her what it was like looking back at photos from her hospital stay.
“You know, it took me a while to kind of even look at the photos, but now looking back on it, I think it’s pretty amazing that I went from being catatonic not being able to like my body not being able to function properly to how I am now,” she said.
Kuzma wanted to share her story to show those who suffer from brain injuries might look fine on the outside, but it’s still an everyday struggle on the inside.
As for how people are tested for Anti-NMDA receptor encephalitis, it’s done either through a blood sample or cerebral spinal fluid.
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