July is Juvenile Arthritis Awareness Month
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Yes, kids do get arthritis and based on recent numbers about 1 in 250 have been diagnosed with some form of it. My son is one of them. He has Juvenile Rheumatoid Arthrits (JRA) also known as Juvenile Idiopathic Arthritis (JIA) and Juvenile Chronic Arthritis (JCA). Not that anyone is trying to confuse you…
In 2003, he was diagnosed which can be tough to do. It started with his right knee being very swollen and he was slow to get moving in the mornings. It wasn’t until after seeing three doctors that we got the news and I found out that his right wrist was basically fused together. He was put on 7 tsp of Ibuprofen a day, plus a small dosage of Methotrexate. However, he had a flare up two years later and was put on Enbrel injections. I consider this a miracle drug because within 6-8 months he had no symptoms other than a leg length discrepancy. So in December of last year, he was able to go off the Enbrel…what a joyous occasion! We were very fortunate to have had only a $40 a month co-pay, but without medical coverage it is $1600 a month!
I found out yesterday that he has had another flare up and needs to go back on Enbrel. I’m thankful we caught it early this time, but I should remind all the moms…listen and act on your intuition. I thought his knee looked swollen again, but wrote it off as hot, humid weather.
I’m sharing his story because arthritis in children is often overlooked and misdiagnosed. We need to create more awareness to fight this devastating disease. For more information visit the Arthritis Foundation. They have local chapters and provide many resources for families and the kids. Kids Health for parents also offers some great info about JRA.
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6 comments
Good post. One of my sons has jva too. Wev’e only had one flare up so far, where he had a flare up in the knee and couldn’t walk for a few days. No repercussions so far. We were living in France at the t ime and were lucky enough that the doctors diagnosed it within a few days and referred us to a good specialist in Paris. We are crossing our fingers that he won’t have another episode. He sometimes complains of hip pain but I can’t see any swelling. We are looking for a good specialist in the DC/Md region if anyone can recommend one please. PS. thanks for the follow on twitter.
Glad to hear he is doing better. My son has hip pain at times too, but I attribute it to his leg lengthe discrepency. Finding a specialist can be difficult and I was going to refer you to the Arthritis Foundations web site, but they seem be having some issues today. You might try this one though: http://www.healthgrades.com/local-doctors-directory/by-specialty/pediatric-rheumatology. Hope that helps and thanks for the Twitter follow as well!
Julie~ Thank you for posting this. When I was in 6th grade I was diagnosed with Ulcerative Colitis, basically an infection of the large intestine that includes rheumatoid arthritis. I suffered from it for years before the doctors could get it under control so I know, first hand, how arthritis feels when you are a kid and you are right! There does need to be more awareness of this condition and I hope your son feels better soon.
[…] A blogging friend of mine recently wrote a post about July being Juvenile Arthritis Awareness Month, a topic that is very near and dear to my […]
Hey good post. I am iris and i am 17. I have (JRA) and am coping with it. I just got it less than 2 years ago and am still getting used to it. I thank you for posting this add. Its very inpirational.
ps. iI wish there were more fun programs for arthritis (teens) though
I have had a form of Arthritis called Ankylosing Spondylitis for 15 years and have never had any help from my GP. The best thing I ever did was buy a Tens machine. It really does work for my particular ailment. Better than any pills.
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