CHICAGO (WBBM NEWSRADIO) — A Loyola University volleyball player was hit with a one-in-a-million kind of neurological condition this summer, but the Geneva resident is back playing for the team after undergoing a new treatment.
Dr. Ayush Batra, a neuro critical care specialist at Northwestern Medicine, diagnosed Grace Hinchman with febrile infection-related epilepsy syndrome (FIRES) after her headaches and high fevers led to daily seizures and hospitalization.
He said it was clear things were bad after asking her about volleyball.
“She didn’t have the reaction that [either] I was expecting or her family [was], and seeing her family’s faces in response to her response — or lack of response — was really the dramatic moment where we realized this is pretty serious and things were getting worse really quick.
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Hinchman responded well to Anakinra, an arthritis drug that has been effective in treating FIRES, and now the 20-year-old is sharing her story.
“I just want to help as many people as possible,” Hinchman said. “I want to help doctors understand more about the disease; I want to help people who get it understand more about it, because I personally didn’t know anything about it.”
She told Northwestern Medicine that after having some “why me” moments, she now aims to provide hope to others experiencing FIRES.
“Just having a positive outlook on it and being like: ‘Yeah, I’m one in a million,’ that’s super cool, especially to have that comeback story,” Hinchman said.
Epilepsy specialist Dr. Stephen VanHaerents said Hinchman went from not being able to communicate intelligibly to normal function within 48 hours of taking Anakinra.
“These weren’t really available 10, 15 years ago, and so now we treat this condition very differently, and Grace has responded beautifully,” VanHaerents said.
Northwestern said only 1 in 5 FIRES patients returns to normal life. For Grace, that means recording 23 digs in each of her last two games.
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