July is Juvenile Arthritis Awareness Month, and we want to give an extra shout-out to both our juvenile spondyloarthritis warriors, and the medical rock stars who care for them: pediatric rheumatologists.
Kids with juvenile spondyloarthritis (JSpA) have it tough. One in about 1,250 children live with JSpA, and many face the stigma that “kids don’t get arthritis,” and have their symptoms chalked up to “growing pains.” Some 20 percent of kids with JSpA will go on to develop ankylosing spondylitis as adults, but early detection and treatment are crucial in all cases to ensure a better quality of life. Yet even diagnosis presents special hurdles for kids. There are estimated to be fewer than 300 pediatric rheumatologists left in the U.S., forcing some families to travel over 200 miles for a single visit.
Juvenile spondyloarthritis often starts with pain in the leg joints, such as the hips, knees or ankles. It may take months or even years for other joints to become affected. One telltale sign that occurs in some kids and teens – and may tip their doctors off that they have spondyloarthritis – is iritis, inflammation in the eye. (Visit our JSpA website to read the stories of some of these brave kids and teens – and if you’re in this age group yourself, submit your story and you might inspire someone else!) When it comes to young patients, disease flares and remissions may come and go unpredictably. Kids may have bad days and good days, but even a long stretch of good days does not mean they are cured. With a chronic illness like JSpA, it’s important to work hand-in-hand with your doctor to manage the disease.
That’s why having access to a pediatric rheumatologist is key – but not easy for all families. One-third of all practicing rheumatologists are projected to retire by 2030, adding to this critical shortage of pediatric rheumatologists in the U.S., according to the American College of Rheumatology’s 2015 workforce study. Twenty-two states have fewer than three pediatric rheumatologists, and several states have zero.1 Patient need is expected to increase while the number of doctors shrinks, leading to more limited access to care.2
The SAA is lucky to have three amazing pediatric rheumatologists on our Medical and Scientific Advisory Board: Dr. Robert Colbert, Dr. Judith Smith, and Dr. Pamela Weiss. We thank you for all you do for your young patients!
If you’re a teen with JSpA or a family member of a young spondyloarthritis patient, check out our comprehensive, national rheumatologist directory to find a pediatric rheumatologist near you. SAA is here to answer any questions you might have as you or someone you love battles JSpA. Remember, you’re not alone!
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