Tips for Juvenile Idiopathic Rheumatoid Arthritis

By Kelly Mack

3 min read

Since I was diagnosed at age two more than 40 years ago, the condition has changed names (from juvenile rheumatoid arthritis to juvenile idiopathic arthritis), the treatments have greatly improved, but I’m not sure the sharing of lessons learned has increased.

A hope for fewer and milder JIA cases

Fortunately, it is rare for children to be diagnosed with JIA. It was rare when I was a child and continues to be rare now. I believe (and hope) that it is also rare to have the level of severity I have experienced in my life (the various doctors, over the years, say that is the case). It’s a bad disease already, so I hope any child diagnosed experiences a milder form than I did.

Thankfully, reducing pain and limitations from JIA is more possible than ever before with the biologic medications. Hopefully, no child with JIA will have the joint replacements as a teenager and begin needing a wheelchair at such a young age (although I do love the mobility that my wheelchair grants me!).

JIA lessons I'd like to share

Still, JIA can be a hard row to hoe. It will likely be a lifelong fight. But despite the condition, I urge families and these children to live well and enjoy themselves despite the health struggles. These are the lessons learned and experiences that I want to share with those recently diagnosed with JIA.

It may be hard, but it is not impossible to have a good life. Hold on to that and fight for it! My life may look different, but it’s precious to me with dear family, friends, a spouse, a home, and a cat. I love to read, write, travel, and watch shows and movies. I’m eager in collecting joyful experiences and doing work that matters to me. Although I have JIA challenges, chronic pain, and physical disabilities requiring using a wheelchair, I have a very good and happy life.

Go with the aggressive treatments early to prevent as much permanent damage in the future. When I was a child with JIA, the treatments were limited and ineffective. If I had biologics, JAK inhibitors, or even methotrexate to take, I don’t think I’d have the joint damage and pain that I live with now. Use the treatment tools available to you now, and try the new ones that come along if your doctor recommends them.

Build a quality support team for life. This not only includes doctors, nurses, and other healthcare professionals (like physical therapists, occupational therapists, and massage therapists) but also family members and friends you can call on in times of need. There were times my family needed extra help while I was having surgery or laid up in recovery, having physical and emotional support that you can count on is huge. Keep building your support system all your life.

Talk with everyone about the long term. Set life goals and make them known. For example, everyone knew I wanted to go to college. In my high school years, all our plans were about making this happen, doing joint replacements and recovering to improve my physical health, and so forth. Make it known that you have plans and get everyone on board with helping you to achieve them. Also, ask questions about if I do X now, how will it impact me in the future? I wish that I had asked more aggressively, "If you ruin my veins now with blood tests, what will I do when I’m 43 and my veins are gone?' Treatment is not only about now but about lasting you a lifetime in the only body you will ever have.

Pursue a fulfilling life. Don’t put life on hold; live it now as best you can! Some times will be harder when you are having lots of symptoms or challenging treatments, but you will be happy to have a good life to carry you through the difficulties. Go to school, start a career, volunteer, care for family, travel, or do any of a combination of things that will give you a feeling of a satisfying life well lived.

I hope my JIA experience helps others

I truly hope that some of my lived lessons learned help people diagnosed with JIA and their families. It may truly happen that JIA will no longer be a debilitating disease with the newer treatments available. I can even dream that it may no longer exist at some point. But in the meantime, put these experiences to work in the way that works best for you.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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L rick Phillips Moderator & Contributor
Kelly, Those are terrific ideas for anyone diagnosed at any age. I decided in 2000, to pursue aggressive treatment and to have the most fulfilling life possible. I worked hard to have both and the other things on your list. I also get the great chair. I mean if I had one I would paint fire on it and put a 1972 Chevy Chevelle SS hood ornament on it. Of course I would also need a Harley Davidson Skull cap. Just saying 😀
1. Kelly Mack Moderator & Contributor
 Thanks so much Rick! 😀 I love the hot rod wheelchair! My father-in-law once threatened to paint my chair with flames and I wish he had! 😀 I imagine we could have some fun times joy riding! LOL! -Kelly (RheumatoidArthritis.net Team)
Effie Koliopoulos Moderator & Contributor
Dear Kelly, Thank you for bringing awareness to JIA with this article. I was diagnosed with this at 18, though had symptoms that started as early as 15-16. I noticed those diagnosed in their teens like me fair differently than those with it as babies, toddlers, or younger children in grade school. I have met many who outgrew it and went into remission but those diagnosed late teens had it more aggressively like me. Though this isn't the whole case as I know there's more to it but an interesting perspective I have found on my own journey. These are great tips, especially pursuing a fulfilling life. Kids may feel they don't have a future and can't go after their dreams because they are 'sick' or disability may get in the way. That is not true at all! (Effie, Team Member)
1. Kelly Mack Moderator & Contributor
 Hi <inline-mention user-id="3227889" username="Effie Koliopoulos"/> , Hope this article helps all the children and families grappling with JIA. It is interesting that you have found people diagnosed as teens to experience worse symptoms. My experience has been the exact opposite, all the most severe cases I know are with people diagnosed before age 10 and it is a significant difference in joint damage and disability (such as myself who was diagnosed at 2 and started using a wheelchair at age 10, and now have had the disease for more than 42 years). I have met many people who were diagnosed as teens who have had fading severity and not nearly the extent of resulting disability. I suspect that the common experience is that having RA over the course of many years is both painful and can result in severe symptoms and damage, so it doesn't matter ultimately if you were diagnosed in teens, 20s, 50s, or somewhere in between. That being said, the folks I know with the most damage and physical disabilities were all diagnosed as young children. Perhaps it was a lack of good medications available at that age. It can also be very difficult to get such a rare diagnosis as a small child. But I also believe there is something significant about the disease attacking during the formative growing years and how it severely harms bone development. Whenever my doctor has a medical student at my appointments he points out my underdeveloped hands, in particular, as a sign of my diagnosis as a young child. There's some recent research suggesting that JIA being diagnosed being very young could actually be a different condition as it seems to target specific receptors (like IL-6). Hopefully as the research continues, treatments will continue to improve and reduce the levels of damage experienced by children. Best, Kelly (RheumatoidArthritis.net Team)
hwb0w4 Member
Yes, my cousin was dxd. with JIA when he was 10. He has suffered throughout his life and has CHF for 5 years now. He is younger than I. I always felt bad for children who were dxd. especially. I wasn't a child but I was dxd. at age 24 with Severe RA. He has had many of his joints replaced but a couple didn't turn out too good. Good tips indeed Kelly.
1. Kelly Mack Moderator & Contributor
 Hi <inline-mention user-id="3245332" username="hwb0w4"/> , I'm sorry to hear about your cousin's health struggles. I worry about future possible heart complications myself, as I understand that is fairly common with adult JIA patients. Sorry to hear about your severe RA as well--it is a very difficult disease. Hang in there. Best, Kelly (RheumatoidArthritis.net Team)
maryellens Member
I'm going to be 68 in October and was did at age 2. So roughly 65+ years. I live alone, have a small dog, and manage a single family home. Yes, was fairly severe. Mostly burnt out now. But I do have lots of bad days. My whole body is effected. Heart, lungs, bone mass, joints, digestive tract, etc. I walk around, with a walker. I use a power chair in public. I went to Children's Memorial Hospital in Chicago as a child. All I can say, exercise everyday. I love the nustep. And Evergreen commons in Holland, MI, where i now live.
1. Kelly Mack Moderator & Contributor
 Thanks for sharing <inline-mention user-id="3236158" username="maryellens"/> . I deeply admire your strength (being only 43 and diagnosed at 2) as I feel it is very challenging to have this disease for so long at such severity. Thinking of you. Best, Kelly (RheumatoidArthritis.net Team)