“It’s all in their head. They just want attention.”
“Oh, you’re too young for arthritis.”
These are all phrases that children and teens with juvenile arthritis will, unfortunately, come across many times during the course of their lives and their illness.
Even the adults that these kids look up to – parents, teachers, doctors – tend to lack the understanding and/or knowledge needed when dealing with a juvenile arthritis patient.
As a whole, the general public is still vastly unaware of juvenile arthritis, despite the work that JA advocates like myself and many countless others put in to increase awareness – and, despite the fact that it is the 6th most common childhood disease, affecting some 300,000 kids in the United States.
As someone who was diagnosed with polyarticular JRA (now referred to as JIA) at the age of 10, I can personally attest to the fact that it is an isolating illness that can leave you feeling invisible and alone.
Simple – because arthritis isn’t associated with young adults, teenager, kids, or babies, and so no one seems to understand. But guess what – a person of any age can develop arthritis – and this isn’t your “grandma’s” arthritis.
Generally speaking, most people associate arthritis with wear-and-tear from old age. This is osteoarthritis, the most common form of arthritis, and most people will develop it at some point in their lives. Juvenile Arthritis is an autoimmune condition that can attack not only joints but also the eyes and other organs of the body. If not treated in time, the children who suffer from JA can face impaired mobility, disability, and joint deformities, as well as a higher rate of other coexisting conditions. Not to undermine osteoarthritis – but it simply isn’t the same.
The physical pain that children with JA face is excruciating – but the emotional pain of having what is perceived as an “old person’s disease” is just as difficult.
Luckily, many “JA kids” are warriors and survivors – playing through the pain with a smile on their face! Also, there are many medical treatments for children with JA. Medications and physical therapy can be used to treat this condition early on, and most children do quite well with the proper treatments. Some even go into remission altogether!
Not so luckily, rheumatologists with a specialty in juvenile arthritis are few and far between. “Fewer than 200 certified pediatric rheumatologists currently practice in the United States, making it one of the smallest pediatric subspecialties, according to the U.S. Department of Health and Human Services. Thirteen states don’t have a single pediatric rheumatologist within their borders, including heavily populated states such as Arizona, South Carolina and Alabama.”
Of course, our nation faces a “doctor shortage” overall – but why should children and teens with JA have to suffer? Why should their parents have to drive – or fly – hours to see a pediatric rheumatologist? Maybe – just maybe – if we increase juvenile arthritis awareness, the need will be greater spotlighted, and more doctors will choose to specialize in pediatric rheumatology.
However, if you only have access to a general rheumatologist, fear not. They will still be able to treat your child. I saw a “regular” rheumatologist and have nothing but good things to say about him. However, I’m sure that if we knew that pediatric rheumatologists were available at the time, I probably would have went to one … but going into it, we didn’t know WHAT was going on or what to expect.
I’m betting that many of you (JA parents, or JA patients) feel the same way – overwhelmed. Where do you start when diagnosed with a condition that you thought was just for the older population?
A good place to start is by contacting the Arthritis Foundation for information about programs and even a list of doctors nearby. They also have some great information online, here. Another good thing to do is to try to get in touch with people who have lived with JA or who have kids with JA just to talk, commiserate, and have questions answered from a person who has it. A nice place to “meet” these people is online; and another great way to network with like-minded people is at the Arthritis Foundation Juvenile Arthritis Conference.
Remember that taking medications as prescribed, partaking in physical therapy if recommended, and proper diet, sleep, and exercise are recommended. It is also nice to have a good support system whether it is friends, family, an official arthritis support group, church group, school counselor, etc. to help you cope. Lastly, as a parent of JA child, or as a child with JA, remember that spreading awareness about the condition is the best way to decrease ignorance and increase understanding! Do your part – whether it is being active in a Juvenile Arthritis community online, giving a school presentation on JA, or volunteering with the Arthritis Foundation. You can do your part to help make the world aware that, “kids get arthritis, too!”
**If you have a story about your or your child’s life with Juvenile Arthritis, please leave a comment and share it with us!
Don’t forget! If you want to warm up your heart during these chilly winter months and do some good for the holiday season, simply text the word ACTION to 27722 to donate $10 to the Arthritis Foundation, Mid Atlantic Region’s Million Dollar ACTION Campaign for Arthritis