Aches and pains are a normal part of childhood, which can make it difficult to recognize and diagnose conditions such as juvenile idiopathic arthritis (JIA). Early diagnosis of JIA is key, as the sooner kids are diagnosed, the sooner treatment will be applied and the better their long-term outcomes will be.
Parents are often surprised when they first learn of their child’s JIA diagnosis. Arthritis is often thought of as an older person’s disease, but in fact, about 1 in 1,000 kids have it. Because it is under-recognized, I’d like to explain the top misconceptions about the condition to help spread awareness for it.
8 Misconceptions about Juvenile Idiopathic Arthritis
Misconception #1: It’s diagnosed easily and quickly
Unfortunately, this is not true. JIA can be mistaken for growing pains or an injury, and understandably, parents may wait it out to see if it gets better. Kids may have swollen joints, sore wrists or knees, and stiffness. They may even limp because of the swelling or pain.
Further, JIA is a diagnosis of exclusion, meaning that we have to rule out other things, like infections, before we can consider arthritis. That alone can lead to a delay of diagnosis. Additionally, kids need to have arthritis for six weeks before we consider it chronic, as some forms of arthritis can come and go within a few weeks.
Misconception #2: There’s just one type of juvenile idiopathic arthritis
“Idiopathic” means that we don’t understand the cause. We do, however, believe that it is autoimmune, or auto-inflammatory. This means that parts of the immune system that usually help our bodies to fight infection, instead behave in a way that can damage healthy tissue and cause pain and inflammation. There are at least seven different types of JIA. Some involve mostly inflammation of the joints. Others can cause rashes and fevers, and involve organs. JIA is also associated with inflammation in the eyes (uveitis/iritis) which can affect vision.
Misconception #3: Kids outgrow it
While it’s true that some kids can go into remission (and seem to “outgrow it”), most of pediatric cases are chronic, meaning they will be dealing with it for the rest of their lives. The good news is that there can be good disease control with the right treatment. However, there is always a possibility of a flare.
Misconception #4: It’s “silent” so it’s not that big of a deal
Unfortunately, just because the condition can sometimes go unnoticed, does not mean that it’s not a big deal. Kids with arthritis often look fine, but may be in a tremendous amount of pain. Further, it can turn their lives upside down. Their medications are often injections, which may need to be administered daily or weekly, or IV infusions at the hospital every month. Sometimes these medications can make them feel sick, such as headaches, nausea and fatigue. There is also the potential for serious complications from the condition, such as inflammation of the eye, or uveitis. Uveitis may not have any symptoms early on, but can can cause blindness, meaning children with JIA need to see the eye doctor regularly for screening to catch it early and save their vision.
Misconception #5: There are not good medications
There’s a misconception that we don’t have good medications to treat JIA, which is fortunately not true. Thanks to researchers, especially the Pediatric Rheumatology Collaborative Study Group (PRCSG), we have a number of good options now that have been studied and found helpful and safe in children. However, there may not be enough options for those kids who continue to have trouble controlling their disease. This is why we need further research, more medication options, and ultimately, a cure.
Misconception #6: Joint pain is the only symptom
JIA has many different manifestations, not just joint pain. Kids with JIA may have physical limitations due to joint stiffness and swelling. Other symptoms can vary depending on type of JIA, but may include fever, rash, fatigue, and swollen lymph nodes, to name a few.
In addition to dealing with the physical manifestations of JIA, kids can feel sad and anxious about their condition. There is a lot of uncertainty around it, as a flare can get in the way of their daily activities and future plans. They may miss social activities, sports, or have trouble focusing in school. It can be isolating.
Misconception #7: Kids with arthritis can’t play sports
Kids with JIA can participate in sports but it is important to be sure their arthritis is under good control to avoid injury. Physical therapy is very helpful to learn how to strengthen and protect the joints with exercise.
Misconception #8: There are plenty of pediatric rheumatologists to treat it
Regrettably, this is not true. There is a shortage of pediatric rheumatologists. In fact, there are currently 10 states that don’t have any pediatric rheumatologists. Most rheumatologist trained to treat JIA are at academic medical centers. This may make it difficult to for kids to get the right treatment if they don’t live close to doctors trained to treat the condition.
There is hope on the horizon for kids with JIA. There are researchers seeking to find a cure, as well as a network of pediatric rheumatology providers and parents who are collaborating to improve care and long-term outcomes. It is called Pediatric Rheumatology Care and Outcomes Improvement Network (PR-Coin), and its goal is for rheumatologists to provide excellent, standardized high quality care, regardless of where kids live and go for treatment.
Please help us spread awareness for juvenile idiopathic arthritis. Share this post with your friends and families. With more people aware of JIA, the more likely we can get kids diagnosed earlier, and with proper treatment into remission sooner, which means better long-term outcomes.