Lili Manzo was suddenly paralyzed when she was 13 years old.
Doctors initially diagnosed her with anxiety, but she had a rare form of brain inflammation.
"My emotions are like waves," she told NJ.com.
Lili Manzo was 13-years-old when her whole body went limp for the first time. The New Jersey teen was previously healthy before she was overcome with nausea on the afternoon of March 30, 2022, according to NJ.com. Sitting in her mother's car, Manzo turned pale and quiet, unable to speak or wipe the tears from her face.
"It's like I was there, but I couldn't do anything about it," Manzo, now 14, told the local news outlet.
Manzo had a seizure in the ambulance to the hospital that day. Looking back, she said it felt like she was trapped in a "lucid dream" or a virtual reality game as she lay mostly paralyzed, only able to shake her head yes and no.
For most of the following week, Manzo lay in a hospital bed while doctors tried to figure out what was wrong, according to NJ.com.
She was discharged from Morristown Medical Center after a seven-day stay, during which she regained her ability to use her hands, legs, and voice. However, she was sent home without a diagnosis.
It would take another month for Manzo to be accurately diagnosed with seronegative autoimmune limbic encephalitis, a rare condition where the immune system attacks the brain.
Doctors initially said her symptoms were caused by anxiety, and prescribed her antidepressants
During her first stint in the hospital, Manzo's doctors ran multiple tests to screen for brain abnormalities. An MRI and electroencephalogram (EEG) both came back clean: no brain tumor, and her brain activity seemed normal. But the teenager's braces were also obstructing a crucial part of the imaging, according to her mother, which the doctors ignored.
According to NJ.com, Manzo's doctor at Morristown Medical said her illness was "all in her mind." He prescribed antidepressants, and discharged Manzo once she regained her motor skills.
But back at home, the teen still struggled to walk and talk, her mother told the news outlet. On April 22 — not quite a month after her first symptoms — she suffered her second seizure.
A second neurologist agreed that the cause of Manzo's symptoms was likely anxiety, and increased her antidepressant dosage. The neurologist also recommended against bringing Manzo to the emergency room after her seizures. According to her parents, the doctor said Manzo might "over-medicalize" her case in a hospital setting.
But Manzo's medical crisis was not imagined. When she had a third seizure a week later, her parents brought her to the emergency room at Saint Clare's Denville Hospital in Morris County, New Jersey.
Manzo's immune system was attacking her brain
Dr. Jeffrey Kornitzer, a pediatric neurologist, finally took Manzo's condition seriously. After a spinal tap, he diagnosed Manzo with seronegative autoimmune limbic encephalitis, a rare type of brain inflammation caused by the immune system attacking her brain.
Manzo's condition is rare — about one in 100,000 people are diagnosed annually with autoimmune encephalitis, according to Children's Hospital of Philadelphia. About 40% of those cases affect kids younger than 18.
Kornitzer recommended treatment with intravenous immunoglobulin therapy, which has started Manzo on the path to recovery. But she's not completely healed yet.
"Sometimes I'm really tired," Manzo told NJ.com, "and it doesn't matter how much sleep I get — I'm still tired. And sometimes I'm emotionally not there. Like I get random bursts of anger and sadness. My emotions are like waves."
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