As this year’s Juvenile Arthritis Awareness Month has now passed, I find myself reflecting on how far we’ve come since I was a child fighting the pain and sickness of this disease. Over 300,000 children in the US live with juvenile arthritis (JA). There are many forms of juvenile arthritis, and they affect different parts of the body. I was diagnosed with juvenile rheumatoid arthritis or, as it is called, juvenile idiopathic arthritis (JIA).
JIA Then and Now
Much about having JIA is the same. The illness itself has not changed. Like rheumatoid arthritis (RA), it is a systemic disease. There is swelling of the joints, morning stiffness, and pain ranging from mild to intense. The systemic aspects of JIA are reflected in the fevers, risks of eye complications, and rashes. Over 300,000 children in the US live with these diseases.
What has changed about JIA – and indeed about juvenile arthritis as a whole — is how it is treated. Forty years ago, when I was a child, the only options were aspirin, gold injections, and steroids. Very few responded to gold injections, but I never had a chance to see if I would be one of them. I very quickly developed side effects and couldn’t take it. Steroids were for emergencies only, due to the side effects of inhibiting growth and destroying bone. That left aspirin, a woefully inadequate arsenal of treatment.
The doctors tried to stop the rising tide of my disease, although it is perhaps more accurate to call it a tsunami. Mine was a very severe case and I spent years in a rehab hospital receiving intensive physical therapy. As long as I was getting physical therapy for an hour or more every day, it helped with the pain and maintained mobility. Still, my JIA burned hotter and hotter until it had caused deformities in all joints. By sixteen, my disability had progressed so much I had to use a power wheelchair.
That doesn’t have to happen anymore. With new medications, such as biologics, a revolution has happened in the treatment of JA. Children still go through fevers, pain, and awful complications, but more than ever before, they can live close to normal lives. Some, like Gabi Rojas, go from being in a wheelchair to becoming a dancer. Others go to school, become cheerleaders, participate in track and field, and get to be regular kids.
Good outcomes depend on access to treatment. Just as with RA, early diagnosis and treatment will go a long way toward preventing deformities and disability for children with JA. However, there are a number of barriers. One is the lack of pediatric rheumatologists, which is one of the lowest-paying specialties. Eleven states do not have any pediatric rheumatologists, and seven states have just one each. Another barrier is access to medication that can often be prohibitively expensive. More financial assistance for this is needed for these children.
What Can You Do?
Raising awareness about JA is crucial to removing the barriers. There are several important initiatives in the community. They include The Arthritis Foundation’s Kids Get Arthritis Too, a support and resource site for families and children living with JA. The Arthritis Foundation also hosts an annual Juvenile Arthritis Conference every July, an important source of information and fun. Christine’s Kids is Christine Schwab’s advocacy page featuring stories of real kids with JA and their families.
You can also help. As you’re raising awareness about RA, include some basic facts about JA, as well. Make sure more people know that kids get arthritis, too. If you have JA, tell people about what it meant to be a kid with this disease.
Interview with Dr. B.
I have lived with JA for 47 years and used a power wheelchair since I was a teenager because of it. I tell my story as often as I can, in the hope of helping more people understand the severity of juvenile arthritis. When I tell them that kids today don’t have to have the experience I did, I hope it will resonate enough that more and more people will get involved to help kids live better lives until we have a cure.
Earlier this week, I was interviewed on Speaking of Health with Dr. B, a podcast where Dr. David G. Borenstein discusses different health issues, often with a focus on rheumatology and chronic pain. He has featured issues related to JA throughout July and I encourage you to listen to the interesting and compassionate people interviewed on this program. I appeared on the July 29 episode, entitled A Child Is Not a Small Adult! and you can listen to it and the other programs on JA on Dr. B.’s website. The broadcast is also available on iTunes. Register on Dr. B’s website to qualify in the contest to win an electric bike.
To learn about JA, visit our juvenile arthritis area.
Lene writes the award-winning blog The Seated View. She’s the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.
Published On: July 30, 2014