A Nation Unaware: We Need To Increase Juvenile Arthritis Awareness – by Ashley Boynes

“She’s just a hypochondriac.”

“He’s lying.”

“It’s all in their head. They just want attention.”

“You’re faking!”

“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.

Why?

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!

 

Stay well,

Ashley Boynes

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

 

 

6 thoughts on “A Nation Unaware: We Need To Increase Juvenile Arthritis Awareness – by Ashley Boynes

  1. Oh Ashley, reading this made me cry :'( Raising awareness about Juvenile Arthritis and the need for trained ped rheums has become my life’s mission.

  2. My daughter was born crying. As an infant she never slept. She cried ALL of the time. I had wonderful doctors that couldn’t find anything wrong, and once when I just felt like the crying was different, something was going on, I took her to a Pediatric Urgent Care center. The doc was angry at me for taking her in “for no good reason”. I’m sure that this started no later than 18 months, probably earlier, yet it took until a month into age 6 to be diagnosed. In 2007 she developed pneumonia which really kicked it into gear. A few months later came Raynaud’s, then Scleroderma, then Mixed Connective Tissue Disease followed (so far) by Dermatomyositis. She is 9. N.I.N.E. Doesn’t that just SCREAM wrong??? Her arthritis was bad enough. She was quickly placed on Naproxen followed by Methotrexate, followed by Enbrel. She went from barely walking & wanting no physical contact to tackling her brother with Enbrel. Until the DM kicked in. Then she was back to not being able to walk, sit up by herself, brush her hair,etc. (Yes, Dermatomyositis is a form of arthritis. It is muscle inflammation with rash.) But… she looks fine, right? People don’t get it! Tell the world! Get bumper stickers, attend the conferences, attend and / or raise funds for a walk, get a key chain. People need to know!

  3. I think it is horrible that people don’t listen a little closer to young people. Too many times they are ignored to only find they were telling you something that was very important and not just complaining.

  4. I had built up tears while reading this. I love seeing these websites. I was diagnosed with JIA weeks before my sixteenth birthday. I had symptoms since I was really little though. But just like your article, I was constantly told that I was exaggerating, or that I was just clumsy and forgetful of where I had hurt myself. After the first few x-rays and no broken bones, who would believe a seven year old when they have had your medical bills raised and no results. When it spread to my wrists, they figured I had carpel tunnel and my cure would be to just stop typing so much (I love to write books and poetry and am constantly typing). When it was effecting my ankles, back and knees they went back to the clumsy and forgetful comments. It wasn’t until I stopped one day with chest pain. I went around telling everyone, “My heart hurts.” After a few days of telling me I had heart burn, the sudden, random pains finally got everyone’s attention. When it was on both sides of my chest and in my diaphragm my mom took me to a specialist. X-Rays showed nothing but when my rheumatologist pushed on my joints I could tell exactly where the pain was directly located. I was put on different medications for several weeks. After an MRI, they finally found the source of my pain. I was diagnosed with Juvenile Idiopathic Arthritis. The specific arthritis type is Ankylosing Spondelitis. I have arthritis in my spine, wrists, rib cage, ankles, hips and knees.
    After a long trip of complaining and being shot down by adults and made fun of by other children who just didn’t understand or have any awareness that children get arthritis too, I finally have a set rheumatologist and take Sulphasalazine and also take injections of Humira to decrease inflammation and ease the pain.
    Thank you Ashley Boynes for helping to raise awareness of JA. With a full heart, I appreciate it. God Bless you and all who have Arthritis, the elderly and the children who need to be heard.
    Thank you for allowing me to share my story.
    Sincerely,
    Sarah Ashley

  5. Thankfully when my child was diagnosed it was almost immediately. I honestly let her limp around on her leg for a good couple of months thinking it was growing pains because we saw nothing to the eye. I had already made her an appointment to the doctor the day I sat her down (thinking she had maybe hurt her leg but was and was used to babying it) when I noticed her knee was twice the size of the other. Trust me, I bathe my children every night I know every nook and cranny of my children’s body. I have NEVER noticed her knee being a different size. The following day was her appointment and her pediatrician said it was JIA. We”ve tried multiple meds with no help. She has an appointment on the first of July for an injection shot. I’m hoping that this helps. It is so hard having a 6 year old that can’t play with other girls her age because of her condition. I want my baby to be normal so bad. I have always said out of all of this she’s been able to keep her spirit up but know I now it’s effecting her. She would never tell me but a mother always knows what her daughter is thinking. It’s comforting to see other families (not comforting) going through this. Everyone has their opinion on it and how it should be treated. We are seeing a specialist at All Children’s Hospital. I’m confident that they will find relief for my little Natalie. JIA does need more awareness and I’m thankful for websites like this.

  6. hi my name is alex and im 18 years old. i was officially diagnosed this year, but i can rememeber these pains for as long as i can remember. no one would believe me, they called me lazy because i told them my legs hurt. things seem like their only getting worse for me. i feel as though my health just keeps deteriorating and no one wants to listen to me “whine” anymore. just because i put on a brave face when im in pain doesnt mean that it doesnt hurt. i really love reading these websites because it reminds me that im not alone.

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