Arthritis Foundation Releases its First-Ever Report on Juvenile Arthritis
It’s not just growing pains: childhood rheumatic diseases affecting nearly 300,000 U.S. kids and teens are difficult to diagnose
ATLANTA (July 11, 2022) – In its first-ever collection of juvenile arthritis (JA) patient-reported data, the Arthritis Foundation finds that pain is interfering with the lives of most kids and teens with a childhood rheumatic disease. Released during Juvenile Arthritis Awareness Month , the data from a survey completed by parents and guardians of children ages 5 to 17 living with JA shows:
- Nearly 80% of respondents reported pain that interfered daily at a moderate or severe level
- More than two-thirds reported moderate to severe anxiety and depression
- 32% reported their child often or almost always tired easily , making it difficult to keep up with schoolwork, participate in sports or exercise or do other things they enjoy
Not just growing pains
While JA pain is invisible, it’s one reason why childhood rheumatic diseases affecting nearly 300,000 U.S. kids and teens are difficult to diagnose – and why the road to treatment is often a long one.
“Many people are surprised to know that arthritis affects people of all ages, not just adults and seniors,” said Steven Taylor, President & CEO of the Arthritis Foundation. “It’s our mission to make care better for kids living with JA, especially since symptoms can often be dismissed as ‘growing pains.'"
Knowing the symptoms
To help pinpoint an arthritis diagnosis, pediatric rheumatologists, of which there is a critical shortage , say parents should be aware of the most common symptoms:
- Persistent joint pain or stiffness, typically worse in mornings or after naps, or after sitting in one position too long
- Red, swollen, tender or warm joints
- New uveitis eye inflammation diagnosed by an ophthalmologist
- High fevers that are persistent without clear infectious cause
- Limited or decreased range of motion of joints
- Family history of rheumatoid arthritis or autoimmune diseases
“While some of these symptoms can signal a range of conditions, it’s important to get them evaluated appropriately by your primary medical doctor and seek additional referrals to get to the right diagnosis,” said Dr. Susan Shenoi, Clinical Director of Pediatric Rheumatology at Seattle Children’s Hospital and Research Center. “Advocating for your child in a timely manner by spotting these symptoms or signs early can help parents accelerate appropriate additional evaluation or referrals to a pediatric rheumatologist that are necessary for a JA diagnosis.”
From backflips to bone scans and bloodwork
For competitive gymnast Estelle LeBoeuf, 15, swelling and soreness in her hands and feet almost kept her off the mat for good.
“When I was 10 years old, I was sent to a pediatric orthopedist to find out what the source of my problems were. After seeing a handful of different doctors, I was finally given a diagnosis of juvenile idiopathic arthritis (JIA), after my test results showed active arthritis in over 15 of my joints,” said LeBoeuf.
LeBoeuf then went into remission, but she had a flare at age 13. Since then, LeBoeuf has tried three biologics and has since not gotten back into medicated remission. She said staying involved in gymnastics has kept her symptoms from getting worse – and the hard days are worth it, because she is able to keep doing what she loves.
“Some mornings, I wake up with sore and swollen joints, and it is so hard to work out. I have to do modified workouts and special conditioning every week, and I also go to physical therapy,” said LeBouef. “I know that I am so lucky that I can keep doing my favorite sport. That’s not always the case for kids like me.” Read more about Estelle's story.
Sharing the Journey
Since 2002, the Arthritis Foundation has partnered with the Childhood Arthritis and Rheumatology Research Alliance (CARRA) to support the CARRA Registry, a long-term database of children with JIA and other pediatric rheumatic diseases, as well as translational research and small investigational grants aimed at improving outcomes in children with these diseases.
The Arthritis Foundation has pain management tools, school solutions, mental health resources and more to help parents navigate their child’s JA. Parents and kids can also connect with others affected by JA through the Arthritis Foundation’s community of advocacy and support.
About the Arthritis Foundation
The Arthritis Foundation is fighting for all people who live with arthritis. As a Champion of Yes, it's the Arthritis Foundation's mission to turn the obstacles arthritis causes into opportunities. The Arthritis Foundation champions life-changing solutions and medical advancements, and it also provides ways for people to connect, break down barriers in health care and join the fight for a cure — uniting hearts, minds and resources to change the future of arthritis. To join the fight to cure arthritis, visit arthritis.org .
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