Woman Shares her Experience with FIRES and Recovery

At 20 years old, Grace Hinchman was – for all intents and purposes – a happy and healthy young adult. Grace was studying Business at Loyola University Chicago and playing volleyball. Then, shares MSN, she woke up one day with a sore neck. Not thinking much of it, Grace just went along with the rest of her day. But by the end of the day, she had a fever and a headache. She went to the hospital. But doctors didn’t think anything was too wrong. However, within just a few days, Grace was hospitalized due to a low white blood count and non-stop seizures. Eventually, Grace was diagnosed with febrile infection-related epilepsy syndrome (FIRES).

Grace’s Story

Prior to her diagnosis, Grace had begun having seizures every hour. She was, at point, developmentally regressing: having difficulty speaking, struggling to count or perform simple tasks, or laughing or crying at inappropriate times. Grace also had both visible seizures and speech arrest. After performing certain tests on Grace’s cerebrospinal fluid (CSF), the doctor found a high level of cytokines. This allowed the doctor to diagnose Grace with FIRES.

FIRES is triggered by some sort of infection, as the name suggests. This prompts a fever which causes inflammation and other brain disturbances. As Grace’s condition worsens, doctors sedated and intubated her. Their goal was to protect her brain and body from any additional damage.

Grace’s doctors decided to treat her with anakinra. This biologic and immunosuppressive drug is typically used to treat rheumatoid arthritis or neonatal-onset multisystem inflammatory disease (NOMID). Grace had an extremely positive response to treatment. Within just 2 days following treatment, Grace no longer needed intubation. She gained her communication skills back and started to improve cognitively. Over the coming weeks, she relearned how to work.

Grace credits her continued recovery to her ketogenic diet and her anakinra, which she takes daily. This has helped her seizures stop; in fact, Grace hasn’t had a seizure since June 2022. She is grateful for her recovery and hopeful for what the future will bring.

About Febrile Infection-Related Epilepsy Syndrome (FIRES)

The Kennedy Krieger Institute describes febrile infection-related epilepsy syndrome (FIRES) as:

a newly recognized epileptic encephalopathy…that suddenly develops after an acute febrile illness. A child will develop frequent and progressively debilitating seizures within a few weeks after a febrile illness such as those from a minor upper respiratory illness or a gastrointestinal bug.

Typically, seizures begin within 1-14 days following whatever initial illness or infection occurs. FIRES is most common in school-age children though it can occur in adults. Signs and symptoms can include:

  • Treatment-refractory seizures
  • Cognitive delay
  • Migraines
  • Behavioral issues such as agitation, apathy,
  • Neurological impairment
  • Status epilepticus
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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