July is Juvenile Arthritis Awareness Month. One in one thousand American kids is diagnosed with juvenile idiopathic arthritis, or JIA.
It’s a disease where the immune system attacks the joints instead of attacking bacteria and viruses. JIA is sometimes tough to diagnose, and as a result it can go undetected while destroying a young person’s joints.
High school sophomore Amber was a competitive gymnast until two years ago. Now, the girl who loved to tumble across a mat has trouble walking across the floor.
“It seemed like a lot of things were hurting and I kept going to doctors and they kept diagnosing it as sprains, because nothing was showing up in the x-rays,” shared Amber.
Finally, an orthopedic specialist referred Amber for blood work.
“When we got the result for that her rheumatoid factor came back at like 102. It’s supposed to be 14,” said Maria Steiper, Amber’s mom.
Ginger Janow, MD, MPH, Assistant Professor of Pediatric Rheumatology, Hackensack University Medical Center, says parents and patients overlook symptoms because some kids with JIA don’t feel joint pain. She advises parents to look for other signs.
“A limp on a daily basis. So, swelling, so subtle things where you notice that they are using a different hand for something,” said Dr. Janow.
She says patients need to get a diagnosis as soon as possible so they can start treatment.
“The inflammation if left unchecked is sort of like a house on fire. If you don’t put out the fire, it burns down the structure,” continued Dr. Janow.
Amber says the monthly infusion of the drug Actemra did not work but she’s hopeful the pill form of Xeljanz will. Weekly injections of two other medications have not.
“You just need to keep pushing through and you will get through it,” said Amber.
Researchers still aren’t sure why kids develop JIA, genetic and environmental factors play a role. JIA used to be referred to as juvenile rheumatoid arthritis, but doctors have moved away from that name.