February 22 is World Encephalitis Day and a Jacksonville teen is opening up about her journey through the disease that left her hospitalized for more than two months.
In September 2017, Shuronda Hester was an 18-year-old student at Tallahassee Community College with plans to transfer to Florida State University.
“I was home with my roommate and one of my friends was over,” Hester said. “And I guess that’s when I had that moment when I had that first seizure.”
Hester doesn’t remember much from the following months, but her mother, Tameka Lewis, does.
“I was hurt, I was distraught, I didn’t know what to do,” Lewis said.
In total, Hester went to the hospital in Tallahassee three times and was sent home each time without answers. Lewis decided to bring her daughter home to Jacksonville.
Hester grew increasingly confused, at one point asking for her great-grandmother who passed away eight years ago. When her personality began to change, Lewis brought her to Mayo Clinic.
“Had she stayed in Tallahassee, with the way that her behavior was, she would have been admitted into a psych ward and not gotten the proper treatment that she actually needed,” Lewis said.
Mayo Clinic Neurologist Dr. Jason Siegel said blood and spinal fluid tests confirmed doctors’ suspicions. Hester had Anti-NMDA Receptor Encephalitis.
“It’s an autoimmune disease in which your body makes antibodies that essentially go after your brain the same way they would fight off an infection,” Dr. Siegel said.
Symptoms of Anti-NMDA Receptor Encephalitis include seizures, confusion, and personality changes.
“Anything from a gradual onset of psychosis, confusion, disorientation, but in a way that is usually a bit more traumatic than 'oh, I just forgot where my car keys are,'” Siegel said.
While Siegel said some cases are caused by cancerous tumors, others have no apparent cause. Scans of Hester’s body turned up negative for cancer, so she fell into the second group.
“It just kind of happens,” Siegel said.
The condition is rare, with Siegel estimating only two or three cases in Jacksonville each year. It is most common in younger people.
“Teenagers, people in their 20's,” Siegel said.
Once diagnosed, Hester received treatment to essentially turn off her immune system. But her life had changed in ways she is still coping with today.
“I wanted to be in a classroom actively learning, and I’m not,” Hester said. “I’m not getting my college experience. It’s like, I lost a lot of stuff.”
Despite everything, Hester is still taking online classes through TCC and will graduate in May. After that, she plans to become a nurse.
“No matter what happened or what was thrown her way, she persevered, she kept on,” Lewis said. “She’s determined, and she has goals. She knows what she wants. So she’s making a point to do it and prove others wrong.”