An Experimental Treatment Changes Kayla’s Life for Good

When Kayla was 4 months old, she started developing fevers and rashes, and was not eating. Her parents took her to no fewer than 22 specialists near their home in Illinois before they finally got an answer. Kayla has an ultrarare disease called neonatal-onset multisystem inflammatory disease (NOMID). The disorder causes persistent inflammation and tissue damage, affecting the nervous system, skin and joints. Kayla’s family’s search for a treatment led them to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).

At the time, Kayla was the youngest patient to be diagnosed with NOMID among the about 100 known cases around the world. She was started on a daily medication called anakinra that changed the course of Kayla’s life.

Her early diagnosis and treatment were crucial to her health and development. While the sight she lost in one eye at 11 months of age was never regained, Kayla has not had any other major developmental issues, and her hearing has improved.

“Kayla is doing wonderful,” Kayla’s mom says. “She’s a junior in high school now, a straight-A student, and her disease has been stable. Going to The Children’s Inn is always the highlight of our visits to the NIH. Kayla enjoys cooking, and she loves meeting families from other countries—moms from Jamaica or Guatemala. We get to ask them, ‘How do you make that?’ For many families, their love language is food. They comfort one another with food.”

She’s (Kayla) grown up here. This is her favorite place.
— Kayla’s Mother, Dorelia

NOMID Research

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

In 2013, research conducted in part at the NIH led the FDA to approve anakinra (Kineret) for treating the signs and symptoms of neonatal-onset multisystem inflammatory disease (NOMID). It’s a tremendous rare disease treatment success story. Read more about the NOMID research effort and the dedicated clinicians leading it.

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