Hispanolistic/Getty Images Lili Manzo was suddenly paralyzed when she was 13. Doctors initially diagnosed her with anxiety, but she had a rare form of encephalitis. “My feelings 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 being overcome by nausea on the afternoon of March 30, 2022, according to NJ.com. Manzo sat in her mother’s car and grew pale and silent, unable to speak or wipe the tears from her face.
“It’s like I was there but there was nothing I could do 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 and could only 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 going on, according to NJ.com.
She was released from Morristown Medical Center after a seven-day stay during which she regained the ability to use her hands, legs and voice. However, she was sent home without a diagnosis.
It would be another month before Manzo was diagnosed with seronegative autoimmune limbic encephalitis, a rare condition in which the immune system attacks the brain.
Doctors initially said her symptoms were caused by anxiety and prescribed her antidepressants
During her initial stay at the hospital, Manzo’s doctors ran several tests to look for brain abnormalities. An MRI and an electroencephalogram (EEG) both came back clean: no brain tumor and her brain activity appeared normal. But the teen’s braces also hampered a crucial part of imaging, according to her mother, which doctors ignored.
According to NJ.com, Manzo’s doctor at Morristown Medical said her illness was “all in her head.” He prescribed antidepressants and released Manzo once she regained her motor skills.
But at home, the teen still had trouble walking and speaking, her mother told the news outlet. On April 22 – not quite a month after her first symptoms – she suffered her second attack.
A second neurologist agreed that the cause of Manzo’s symptoms was likely anxiety, and increased her antidepressant dosage. The neurologist also advised against taking Manzo to the emergency room after her seizures. According to her parents, the doctor said Manzo could “over-medicate” her case in a hospital.
But Manzo’s medical crisis was not imaginary. When she had a third seizure a week later, her parents rushed her to the emergency room at Saint Clare’s Denville Hospital in Morris County, New Jersey.
Manzo’s immune system attacked her brain
dr Jeffrey Kornitzer, a pediatric neurologist, eventually 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 is diagnosed with autoimmune encephalitis annually, according to Children’s Hospital of Philadelphia. About 40% of these cases involve children under the age of 18.
Kornitzer recommended treatment with intravenous immunoglobulin therapy, which has put Manzo on the road to recovery. But she’s not fully 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 not there emotionally. Like I get random outbursts of anger and sadness. My feelings are like waves.”
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