Ready to learn everything you can about JIA? From staying active to dealing with flares, we've got you covered.

Daily exercise is essential for kids with juvenile idiopathic arthritis. Here’s how to make it fun.

JIA Exercises

Juvenile idiopathic arthritis (JIA) is an autoimmune disorder, affecting primarily kids before the age of 16. But this isn't only a joint disease. Find out all the ways JIA can affect children from head to toe.

11 Ways JIA Affects the Body

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Juvenile idiopathic arthritis is more than a joint condition. It can impact  a child's organs, growth, and more.

11 Ways JIA Affects the Whole Body

How Juvenile Idiopathic Arthritis Affects the Body

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Daily exercise is essential for kids with juvenile idiopathic arthritis. Here's how to make it fun.

7 Physical Therapist-Approved Moves for Kids With JIA

Brian LaMoreaux, M.D.

Medical Reviewer

Exercises for Kids With Juvenile Idiopathic Arthritis

But Wait! Are the Moves Safe?

The Move: Crane Arms

The Move: Bridge

The Move: Squats

The Move: Sidesteps

The Move: Pull-downs

The Move: Heel Raises

The Move: Chin Tucks

Don’t Forget About Extra-Curriculars

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A Parent's Guide to Juvenile Idiopathic Arthritis

Ask most adults if they would ever go through being a teenager again—without any of their hard-won wisdom, that is—and the vast majority would shirk (or possibly even shriek) at the thought. The emotional highs and lows. The insecurities. The relentless peer pressure. Like, *no*.

For those living with juvenile idiopathic arthritis (JIA), there’s an added layer of stress to all that angst, thanks to juggling symptoms like joint pain, swelling, stiffness, and fatigue with what can feel like never-ending doctors’ appointments and medication regimens, too.

Nearly 300,000 kids and teenagers in the U.S. have JIA, the most common type of arthritis in children. It’s widely considered to be an autoimmune disorder, meaning the body’s immune system mistakenly attacks itself—in this case, the joints or the tissue lining that surrounds the joints. JIA can be unpredictable, painful, and it’s certainly not fun. 

Still, there are some cool things about being a kid with JIA, like access to JIA camp, where kids form unbreakable bonds while swimming, tie-dying, and roasting s’mores. Or attending a national arthritis conference in Washington, D.C. to lobby Congress (and discover their inner change-maker in the process).

To find out what it takes to thrive while living with JIA, we talked with three teens who are walking the walk.

Introducing: 

- __Mariah Aquino-Truss__, 14, a high school freshman in Pittsburgh, PA
- __Lorenzo DiDesidero__, 18, a high school senior in Mt. Sinai, NY 
- __Evie Precup__, 14, a high school freshman in Aurora, IL 

## Q: What are some misconceptions people have about arthritis, and JIA, in particular?

__DiDesidero:__ “The first misconception is that only old people get it. I [also] think there’s a misconception that one medication can help everybody. It can’t. Each person has a different makeup. What helps me might make someone else sick with one dose. I’ve gotten side effects like dizziness and diarrhea when first taking a certain medication. You have to decide whether it’s worth it—it affects each person differently.  I have systemic JIA, meaning I can have symptoms from my neck down. Other people have it just in their arms or legs, or their eyes. And there are degrees of intensity. Another misconception is that we can’t do anything. Like running—we run! We’re physically disabled to a degree, but we can still do the things a ‘normal’ person does for the most part, just with some adaptation. At camp, we don’t stop all day. We just keep going.”

__Aquino-Truss:__ “Some people don’t understand that you can be in pain one day and fine the next. I’d bring a walker to school to sit on, and people would ask me questions but not fully understand. I once asked a teacher if I could sit [on it] while everyone was standing or sitting on the floor. She told me, ‘You’re fine. If you sit down, I’ll need to send you to the nurse’s office.’ But I knew I didn’t need to go to the nurse’s office. I worked with the school to create a presentation and gave it during an assembly with my sister. I explained, ‘I’m usually in pain, and you can’t see it.’”   

__Precup:__ “I once had a problem at school with an adult who had seen a social media post of me playing volleyball over the weekend. She said she didn't believe that I had arthritis and wanted to know why I was now wearing a boot and couldn’t [participate in] gym. But things can change super-fast with arthritis—you can be fine one day and extremely miserable the next. My rheumatologist had told me I could try [volleyball] that weekend, and my coaches were super flexible. This person had no idea—she just saw one picture.

Also, people think that it only involves the joints. I have swelling between my tendons, where they attach to the bone. It’s called enthesitis. For me, it’s a lot worse than my normal arthritis pain, a lot more intense. One day, I woke up and when I put weight on my ankle, it felt like my bones were rubbing against each other.”

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## Q: Why is JIA camp so popular? 

__DiDesidero:__ “It’s [often] your first chance to meet other people your age who have it. Some are a little older or younger, as well as adults who had it as teens, so you can see what your adult life might be like. Part of the connection is the sense of understanding without needing to explain. But you also get to do normal things: cooking, making cookies, hot chocolate, brownies, and making tea out of wild plants, [plus] crafts and sports, or our own version of them. A lot of people love going into the lake, because it’s not as hard on your body. You can go biking or hiking, and when we play ‘capture the flag,’ if you can’t run, you can fast walk. We’re doing it for *us*, and we do whatever works. We adapt it to ourselves.”

__Aquino-Truss:__ “I had a flare during my first summer at camp. I was 10 years old and had never been away from my mom for that long. The friends I made there helped me a lot. They made me drawings. My camp counselor would sit by my bed at night and hold my hand until I fell asleep.”

__Precup:__ “We get to go boating and blobbing, which is this big pillow that someone jumps on and you fly off of it into the water. And we sit in this big circle and talk about more serious stuff: ways to deal with JIA, coping methods. One year we made heating pads. And, we had a smoothie competition, learning about healthy foods to fight inflammation. I started going to camp at age nine, the year I was diagnosed. My mom was the camp nurse, and she has psoriatic arthritis, like I do, so I got to have her there with me. 

The friendships you make with some of those kids are better friendships than your average ones because you connect on a different level. Everyone’s there for the same reason—we’re all dealing with it, we’re all hurting. I met one of my best friends, Maya, at JIA camp, and she’s always there to talk, especially when I’m having a bad day or a flare-up. She just understands, as opposed my other friends who might not get it. Especially with the meds, she understands how difficult it can be dealing with the side effects. And the pain—some of my friends might think I’m [talking about it] for attention.”

## Q: What are your superpowers?

__Aquino-Truss:__ “I’m very determined. Anytime I want something, I usually can get it. It helps me with advocating for arthritis because I’m persistent. I don’t just quit and I hate losing. With JIA, I don’t let not being able to do stuff discourage me. I used to be competitive in sports and still am in P.E. And when we play family Mario Cart, I’m *so* competitive.”

__Precup:__ “I’ve gotten better about speaking up. Before I felt so different. I never said much about how I was feeling or what I needed at school. But now I'm in a high school. I got a 504 plan this year and I had a say in it. I can get up and move around during class if I need to. The other day, my P.E. teacher asked me how I was feeling because I was going slower around the track, and it made me feel better that she was aware of it, because I pushed for it. Also, last year I played on the highest club team for volleyball. That’s a big accomplishment.”

__DiDesidero:__ “I’m a creative person. I draw, make art, and write for fun—journal entries and some fiction. Last year, I was a speaker at an Arthritis Foundation gala event in New York City and helped raise over a million dollars in one night. I like being able to help myself and others. Maybe others can’t speak for themselves, or don’t have the opportunity to do so, but I have that opportunity. My mom and I have gone to the Arthritis Foundation Summit in Washington, D.C., and have talked to teams of senators and politicians.”

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## Q: How do you work through a bad JIA day?

__DiDesidero:__ “The summer going into my sophomore year of high school, I was barely able to walk and needed to be carried and fed. My friends could just go out and I couldn’t even dress myself or get food to my mouth. I felt trapped. Now, on an average bad day, I’ll have some trouble walking, will be fatigued, and my arms, hands, or feet may be puffy or red. I rest and try to sleep a little longer. Maybe focus on things not as physical like school work, or drawing if I just want something fun and relaxing. I’ll paint watercolors outside, or draw anime or cartoon characters. It’s good to have a creative thing that help you express yourself without necessarily going out into the world.”

__Aquino-Truss:__ “I draw, I write, I play guitar. It’s an escape. I taught myself how to play guitar using an app, and I write music, too. I’ll talk with my best friend, Zoey. She doesn’t have JIA, but she listens anytime I’m having bad day. She’ll come over, sit in my bed with me, and make me laugh. And I snuggle with my mom still. She rubs my back. It always makes me fall asleep.”


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__Precup:__ “Last year, I didn’t go to school for a couple of days because my hips were bad. I’ll just rest, take the meds I can take. Sometimes I can take a really hot shower, especially when [it hurts] in the morning. I’ll text my friends from camp or the JIA conference and they’ll help. They tell me, ‘Just take it easy today, it’s okay.’”

## Q: What’s next on the horizon for each of you?

__Aquino-Truss:__ “I’m taking an advanced ballet dance class after school with my friend Zoey, which is exciting because I’ve been practicing so hard. And I’m becoming a big sister in October. I always see my friends’ baby sisters and think, ‘Oh my gosh, I wish there was a baby in my family,’ so I know I’m going to want to take care of it. I’ll just want to hold her all the time.”

__DiDesidero:__ “I’m interviewing for college. I want to go into library sciences—you can become a librarian, curator at a museum, or archivist. It’s not just about information, but educating the community. [When looking at colleges], I need to make sure there’s a hospital near campus. Not everyone has rheumatologists who understand JIA. I also currently don’t use my wheelchair that much, but let’s say I had to—it would be helpful to have ramps into my dorm and buildings; elevators; and handicapped spaces in parking lots. I also try to be aware of the landscape, looking for [campuses with] flatter, not-as-hilly areas, in case I’m using a wheelchair or cane.”

__Precup:__ “My family runs the Arthritis Foundation’s Jingle Bell Run every winter. This year, it’s virtual and I’m the youth honoree for the Western suburbs of Chicago, so I’ll tell my story via Zoom. This is my first year of high school. We’re in-person and it’s going really well. I like my graphic design class. We’re learning photoshop. I’m going to use my new skills to help make posters for fundraiser nights. I want to go to medical school—pediatrics, definitely, and probably rheumatology. I love my rheumatologist so much. She inspires me. I want to help kids like myself.”

## Q: What do you want other kids newly diagnosed with JIA to know?

__Precup:__ “When you’re first diagnosed, you think you can’t do things other kids can. You feel so different. But you’re not. You’re actually so much stronger than anyone else, because you have to deal with the pain, medications, and stress. Also, don’t be afraid to speak up and let people know you need different accommodations … when I was first diagnosed, writing was hard for me. I had these pencils that looked like a wishbone, and they were easier to grip and control. And in fifth grade, when I had standardized testing in school and couldn’t fill out those [answer] bubbles, I highlighted my answers and my teacher filled them out for me.” 

__DiDesidero:__ “Don’t be scared of it because JIA can be handled or managed. There’s the [Arthritis Foundation](https://arthritis.org), a whole organization dedicated to helping people with arthritis. Get involved with that community. And don’t be afraid to ask questions so you can learn how to best deal with it. I think people feel bad if they don’t understand a doctor’s answer, but it can be confusing! [Also,] don’t be afraid of the injections. It feels good to give yourself the injection, if you can—it’s empowering because you’re taking care of yourself. It feels like you’re making the decision for yourself instead of having it made for you. Don’t be afraid to push yourself out of your comfort zone.”

__Aquino-Truss:__ “There’s always hope and a ton of other people out there for you. You’re not alone. My mom tells a story about how when we went to a Juvenile Idiopathic Arthritis Conference a few years ago. There were 1,000 kids in the room with JIA. A speaker said that if we had all been there 30 years ago, nearly every kid would have been in a wheelchair. But on that day, only two were. Science has come a long way.”


JIARoundtable

Three teens discuss how they deal with the painful symptoms, frequent medications, and feelings of not always being understood by teachers and school friends. They also praise JIA camps and the undeniable strength they’ve gained from learning how to manage a chronic condition.

Living With JIA

Juvenile idiopathic arthritis brings physical and emotional challenges to young people. They want you to know there are rewards, too.

What It's Really Like to Live With JIA

- __Nearly 300,000 Kids:__ Arthritis Foundation (n.d.) “Juvenile Arthritis.” [arthritis.org/juvenile-arthritis?_ga=2.266497226.516565578.1601351149-317665796.1597336676](https://www.arthritis.org/juvenile-arthritis?_ga=2.266497226.516565578.1601351149-317665796.1597336676)
- __Meaning It Affects:__ National Institutes of Arthritis and Musculoskeletal and Skin Diseases. (2019.) “Arthritis and Rheumatic Diseases.” [niams.nih.gov/health-topics/arthritis-and-rheumatic-diseases](http://niams.nih.gov/health-topics/arthritis-and-rheumatic-diseases) 
- __The Most Common Type:__ Arthritis Foundation. (n.d.). “Juvenile Idiopathic Arthritis (JIA).” [arthritis.org/diseases/juvenile-idiopathic-arthritis](https://www.arthritis.org/diseases/juvenile-idiopathic-arthritis)
- __About JIA:__ Arthritis Foundation. (n.d.) “Juvenile Idiopathic Arthritis (JIA).” [arthritis.org/diseases/juvenile-idiopathic-arthritis](https://www.arthritis.org/diseases/juvenile-idiopathic-arthritis)


J.D. Miller, M.D., RhMSUS

What It’s Really Like to Live With JIA

It’s never easy to see your child in any kind of pain. And hearing that your kiddo has a chronic disease like JIA is an even harder pill to swallow. Understanding the nuts and bolts of the disease, and what to expect, can make it things a little less scary. We talked to rheumatology experts and dug deep into the research to bring you and your family the very latest info on JIA. Here's what you need to know.  

## The Cause of JIA Is Unknown 

Juvenile Idiopathic Arthritis (JIA) affects roughly 10% of children and teens with arthritis. Typically, it causes joint pain and inflammation in the hands, knees, ankles, elbows, and wrists but it is also known to affect other body parts too, including internal organs. The tricky part of JIA: The reason some kids get this disease is unknown and there is no method to prevent it.

“JIA is described as a complex trait, which means that there is no single gene that confers risk,” says Sampath Prahalad, M.D., director of rheumatology at the Children’s Healthcare of Atlanta. “It is due to a combination of many genetic variants with, as of now, unknown environmental triggers.” Translation: It’s still a mystery.

## JIA Even Stumps Scientists 

Scientists aren’t sure why kids develop JIA. (FYI: the word “idiopathic”—the ‘I’ in the acronym—means unknown.) They have theories, of course (i.e. children have certain genes that are activated by a virus, bacteria, or other external factor). Other things that have been investigated—and disproven—as possible causes of JIA include certain foods, allergies, or lack of vitamins.

What we do know is that all six types of JIA (see them, below) are considered autoimmune diseases, meaning your kid’s immune system, which is supposed to fight germs and viruses, gets confused and attacks healthy cells and tissues instead. This causes the body to release inflammatory chemicals that wreck the tissue lining around joints. Usually, this tissue produces fluid that cushions joints and helps them move smoothly. However, when someone has JIA, inflamed tissue may make joints feel painful or tender, look red or swollen, and be difficult to move.

## Oligoarthritis Is the Most Common Subset of JIA

Oligoarthritis is a common strain of JIA, affecting two-thirds of patients, especially girls. It’s also the mildest strain of JIA, affecting four or fewer joints, typically the large ones like the knees, ankles, and elbows, and is usually marked by joint pain and swelling. Onset of oligoarthritis is usually seen in early childhood, often before 2 or 4 years of age. There are five other strains, including:

- Polyarthritis: Affects five or more joints and can begin at any age.
- Systemic JIA: Affects about 10% of children with arthritis, and often starts with back-to-back fevers.
- Psoriatic JIA: Characterized by chronic joint inflammation and swelling, plus an increased risk for asymptomatic eye inflammation.
- Enthesitis-Related: Often involves inflammation of the attachments of ligaments as well as the spine.  
- Undifferentiated: Doesn’t fit into any of the above types. 

## There Are 8 Symptoms to Look Out For

Did you know that children can show symptoms for JIA as young as 2 years old? To catch JIA at its earliest and have the best shot at treating it successfully, make sure you can identify the following symptoms: 

- Joint pain or stiffness that may worsen after waking up in the morning or staying in one position too long
- Red, swollen, tender, or warm joints
- Fatigue 
- Blurry vision or dry eyes
- Rash
- Appetite loss
- High fever

It’s important to note that JIA symptoms come and go. There may be periods of lots of inflammation and worsening symptoms that are called [flares](https://www.healthcentral.com/slideshow/juvenile-idiopathic-arthritis-easing-body-pain). These flares can last for days or months.

## JIA Makes Sitting for a Long Time Difficult 

Another clue that may signal JIA: If your child is having trouble sitting in her seat for long road trips or he's coming home from school in pain, it may be time to visit the doctor. Sitting for a long stretch of time can be difficult for JIA kids since their inflamed joint starts to ache more throughout the day. “In addition, it may be frustrating for kids who can’t do certain things due to joint pain and the limited motion of their joints,” says Erin Jansen, M.D., who works in Pediatric Rheumatology at Boston Children’s Hospital. 

Before and after pain strikes, make sure your little one does some leg and hip stretches. Stretching improves flexibility, and flexibility helps counteract JIA stiffness. Also, “urge your child to talk to you about how they are feeling," says Dr. Jansen. "They are the best judge as to how their body is doing.”

## A Blood Test Is Required for Proper Diagnosis

According to the American College of Rheumatology, a child or teen must have inflammation in one or more joints for at least six weeks, be under 16 years old, and have all other conditions ruled out before being diagnosed with JIA.  

Your pediatrician will probably be the first doctor to start figuring out what’s causing symptoms in the inflamed joints. It’s likely that parents will be referred to a pediatric rheumatologist (a doctor with specialized training in treating arthritis). In order to get a proper and correct diagnosis, a medical history, physical examination, and blood tests will be required. Some of the common blood tests used to diagnose or monitor JIA include:

- __Hemoglobin and blood count testing:__ This test looks at how many cells there are in the blood and what the cells look like. 
- __Erythrocyte sedimentation rate (ESR):__ This test checks the speed at which red blood cells sink to the bottom of a test tube. The more inflammation there is, the quicker the blood cells settle. 
- __Antinuclear antibody (ANA):__ This test looks for certain autoantibodies (immune system proteins) in the blood.

## Kids With JIA *Can* Play Sports

“Prompt recognition and treatment of JIA, as well as the availability of many new medications, means most children do very well and generally are allowed to run and play sports without restrictions,” says Dr. Prahalad.  Even when they are having flare-ups of arthritis, children are encouraged to self-limit their extracurricular activities but not stop completely. It's a good idea for your child to talk to his or her coach when flares happen about an alternate workout for the day, to keep JIA flares from getting worse. It also helps ensure that everyone is on the same page when it comes to taking it easy at practice or missing a game. 

While a JIA diagnosis is scary, there’s a high chance your child will be able to go through life like nothing is wrong. “Having your child continue through life without complications is a major goal of therapy. Most children with JIA do very well after starting treatment,” says Dr. Jansen. 

## There Are Many Treatment Options

According to the Arthritis Foundation, early aggressive treatment is key to getting JIA under control. There are different treatments depending on JIA type and severity. If you’re worried about your child being on heavy pain relievers, don’t be. Typical medication includes many over-the-counter options like Advil or Aleve to reduce pain and swelling. Other treatment options include physical and nondrug therapies including isometric [exercises](https://www.healthcentral.com/slideshow/juvenile-arthritis-exercises-workouts-for-kids) designed to stretch and strengthen the muscles, and healthy lifestyle habits like eating a well-balanced, nutrient-rich diet. 

“Treating arthritis is very important in childhood. If joint inflammation continues for long periods of time, it will cause permanent damage to the bones," says Dr. Jansen. If your child does need prescription meds, don't panic: Taking them now doesn't mean your kid will be on them forever. "Some children may be able to come off medications and stay off them for long periods of time,” she adds. However, it’s important to remember that every child is different and that some children may need to continue to take medication, depending on the severity of their JIA.

## JIA Often Turns Into RA

About two-thirds of children who are diagnosed with JIA usually have a different type of arthritis in adulthood. According to an Oxford Academic study, adults who are diagnosed with JIA as children often experience significant levels of disability as a result of their pediatric diagnosis and JIA often turns into adult rheumatoid arthritis (RA). However, if there is a good transition from childhood to adulthood in terms of treatment, [pain](https://www.healthcentral.com/slideshow/juvenile-idiopathic-arthritis-easing-body-pain) can be manageable. 

“It is important to have regular check-ups and follow the medication regimen prescribed by your physician,” Dr. Prahalad says. Also, a healthy exercise routine such as yoga or daily jogging is encouraged to help maintain a gentle range of motion. 

## You’re Not Alone

When your child is diagnosed with JIA, it can be quite the shake-up. Luckily, there are plenty of other families out there who are going through the same thing. If you browse the pages of [The Arthritis Foundation](https://www.arthritis.org/diseases/juvenile-idiopathic-arthritis),  [American College of Rheumatology](https://www.rheumatology.org/), or [Childhood Arthritis And Rheumatology Research Alliance](https://carragroup.org/) you can learn more about JIA, treatments, and tips for success for both home life and school. “These sites may also inform you about networking opportunities such as walks and arthritis camps that allow kids to meet others with JIA so they can make friends and build confidence,” says Dr. Prahalad. There are also online support groups on [Facebook](https://www.facebook.com/pages/category/Medical-Company/Juvenile-Idiopathic-Arthritis-Support-Group-202728083183919/) or you can find an in-person support group [near you](https://creakyjoints.org/support/arthritis-support-groups/).


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Juvenile Idiopathic Arthritis (JIA) is a type of arthritis that affects kids and teens. Here’s what experts wish parents knew about the life-changing condition.

JIA What Parents Should Know

10 points that will help see you and your family through Juvenile Idiopathic Arthritis diagnosis, treatment, and everything else in between.

What Every Parent Needs to Know About JIA

- __JIA Overview:__ Arthritis Foundation. (n.d.). “Juvenile Idiopathic Arthritis.” [arthritis.org/diseases/juvenile-idiopathic-arthritis](https://www.arthritis.org/diseases/juvenile-idiopathic-arthritis)
- __Long-term JIA:__ *Oxford Academic*. (2002). “Long‐term follow‐up of 246 adults with juvenile idiopathic arthritis: functional outcome.” [academic.oup.com/rheumatology/article/41/12/1428/1783980](https://academic.oup.com/rheumatology/article/41/12/1428/1783980)


What Parents Should Know About Juvenile Idiopathic Arthritis

These 10 things will help see you and your family through Juvenile Idiopathic Arthritis diagnosis, treatment, and everything else in between.

JIA flares can lead to joint pain, stiffness, and fatigue—but these tips can help reduce the risk of flares and help ease symptoms if they arise.

JIA Flares

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From meds to home hacks, these tips can prevent—or tamp down—a JIA-symptom spike.

Best Flare Fighters for Kids With Arthritis

How to Treat Flares in Children with Juvenile Idiopathic Arthritis

- __JIA and MAS:__ Arthritis Foundation. “Systemic Juvenile Idiopathic Arthritis.” [arthritis.org/diseases/systemic-juvenile-idiopathic-arthritis](https://www.arthritis.org/diseases/systemic-juvenile-idiopathic-arthritis) 

- __Heart Function with JIA:__ *Rheumatology International*. (2012). “Assessment of cardiac and pulmonary function in children with juvenile idiopathic arthritis.” [pubmed.ncbi.nlm.nih.gov/20658239](https://pubmed.ncbi.nlm.nih.gov/20658239/)

- __Liver Failure in Patients with JIA:__ *Annals of the Rheumatic Diseases*. (2004). “Juvenile ideiopathic arthritis associated with autoimmune hepatitis type 2.” [ard.bmj.com/content/64/1/157](https://ard.bmj.com/content/64/1/157)

- __JIA and Anemia:__ *Pediatric Rheumatology*. (2014). “Anemia in children with JIA: is it really driven by hepcidin level, or by a set of factors of a chronic disease.” [ncbi.nlm.nih.gov/pmc/articles/PMC4191184/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4191184/)

- __Growth in JIA:__ *Archives of Medical Science.* (2010). “Growth retardation and delayed puberty in children and adolescents with juvenile idiopathic arthritis.” [ncbi.nlm.nih.gov/pmc/articles/PMC3278938](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4191184/)

- __Reproductive Issues in Females with JIA:__ *Journal of Rheumatology*. (2000). “Sex, reproduction, and gynecological disease in young adults with a history of juvenile chronic arthritis.” [pubmed.ncbi.nlm.nih.gov/10914869/](https://pubmed.ncbi.nlm.nih.gov/10914869/)


JIA Starts With Your Immune System

The Joints Are the Primary JIA Target (But Not the Only One)

Sometimes a Fever Is the Main JIA Symptom

JIA can abnormally increase white blood cell activity

The Lungs and Heart May Be Affected

JIA Can Impact Liver Function

JIA Can Contribute to Anemia

Growth Delays May Occur

Puberty Can Also Be Delayed

Chewing May Be Difficult From Mouth Pain

All the facts about causes, symptoms, and treatments for this condition.

JIA Camp Counselor Tips

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School may be in session, but kids still like to play! Use these strategies to keep your child active all year long.

Fun, Always! Top Tips From JIA Camp Counselors

Tips on How to Keep Kids With Arthritis Active

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If your child's been diagnosed, oh boy, do you have worries. Rest easy, we've got all the info you need to know.

Doc Talk! Expert Answers to Juvenile Arthritis Questions

- __JIA Overview:__ Arthritis Foundation. (n.d.). “Juvenile Idiopathic Arthritis.” [arthritis.org/diseases/juvenile-idiopathic-arthritis](https://www.arthritis.org/diseases/juvenile-idiopathic-arthritis)
- __JIA Symptoms:__ Mayo Clinic. (2017). “Juvenile Idiopathic Arthritis Symptoms and Causes.” [mayoclinic.org/diseases-conditions/juvenile-idiopathic-arthritis/symptoms-causes/syc-20374082](https://www.mayoclinic.org/diseases-conditions/juvenile-idiopathic-arthritis/symptoms-causes/syc-20374082)
- __JIA Recurrence:__ Cincinnati Children’s Hospital. (2020). “Juvenile Idiopathic Arthritis.” [cincinnatichildrens.org/health/j/jra](https://www.cincinnatichildrens.org/health/j/jra)


Expert Answers to the Top Juvenile Idiopathic Arthritis Questions

What Are the Main Symptoms of JIA?

What Are the Treatment Options for JIA?

Are There Treatments Beyond Medication?

Can My Child Outgrow JIA?

Are There Risks with Medication?

Will My Child Be Able to Play Sports?

Is There a Special Diet for JIA?

Where Do I Find a Juvenile Rheumatologist?

Are There New Treatments Coming?

A disease like juvenile idiopathic arthritis (JIA) can affect every aspect of your child’s life: physical pain, chronic fatigue, constant doctor’s visits and medications, plus possible learning problems from falling behind. Then, there’s the psychological toll—feeling depressed, anxious, and different from other kids at a time when most children would do anything to fit in with their chosen group.

“The impact can be tremendous,” says Karen Brandt Onel, M.D., chief of pediatric rheumatology at the Hospital for Special Surgery in New York, NY. And while she’s referring to JIA kids, she knows how much their parents are hurting, too. “For a lot of us, we feel very powerless when our children aren’t well.”

Which can be unmooring, especially since parents run the show when it comes their child’s healthcare needs (and everything else), including emotional support. “Parents are the only ones who can do these things” for their kids, Dr. Onel says. “You’ve got to feel powerful.” 

So, how do you help your JIA child better cope—even as you are trying to cope, too? Learn to trust yourself, keep moving forward, and all will be okay, assures Dr. Onel. And try these expert tips, which cover everything from pain control to school and lifestyle interventions to help your JIA child thrive.

## Put on a Brave Face

If you’re tense or upset, your kid is likely to pick up on it and become anxious too, says Dr. Onel. “I can’t tell you how many times the parent is crying while the child is getting their labs done,” says Dr. Onel, which can be very hard on a kid. Even subtle signs of parental distress, like a grimace or a furrowed brow, can be enough to affect your child, she adds. Same goes for giving your child injections at home, if that’s part of your treatment plan—do your best not to flinch or freak out. Remember, as parents, you must try to present a calm, united front. Normalizing the experience is important, and that starts with you. Feel like you can’t do it? Consider this question from Dr. Onel: “If your child had diabetes and you needed to give them insulin shots three times a day, could you do it?” Because diabetes feels more familiar, most parents answer yes to this question, Dr. Onel explains. “Most people are so surprised to hear that children get arthritis,” she says. “Reframing into language that is more familiar makes it easier to trust your ability to do anything.”

## Assemble Your Child’s Pain Management Team

Because JIA pain can impact so many areas of your child’s life, it makes sense to recruit a multidisciplinary team of experts to help, suggests Daniel Sova, M.D., who specializes in pain management at Johns Hopkins University School of Medicine and the Pediatric Pain Rehabilitation Clinic at Kennedy Krieger Institute, in Baltimore. 

“Treating chronic pain in adolescents is like a puzzle,” Dr. Sova says. “You need all the pieces to complete it.” 

Here are a few experts you might consider seeking out. (You can find all of them at a pain rehab clinic.)

- __A pain-management physician.__ If pain is interfering with your child’s schooling, relationships, or daily activities (and the painkillers from your pediatric rheumatologist aren’t helping), make this doc your first stop. Most children with JIA have pain and discomfort—but the impact depends on disease severity and the child’s individual threshold for pain. Your pediatric rheumatologist may recommend over-the-counter or prescription NSAIDs (nonsteroidal anti-inflammatory drugs), such as ibuprofen (Advil) and naproxen (Aleve). But if that’s not enough, you can turn to a physician who specializes in treating pain. A pain doc can prescribe other painkillers, such as nerve pain meds, steroid injections, or “nerve blocks,” which stop pain signals from traveling to the brain. This expert can also develop a pain treatment plan (including lifestyle changes, which we’ll cover in a moment) based on your child’s unique needs and goals, and they may also refer you to one or more other specialists on this list. 
- __A physical therapist.__ If your child is very young and still growing and developing, or needs help staying active, a PT is your next team player to include. Exercise is medicine for kids with JIA, says Joyce Hsu, M.D., a pediatric rheumatologist at Stanford Children’s Health in Palo Alto, CA. It’s vital for preserving mobility and strengthening the muscles around affected joints. A physical therapist will develop a personalized exercise program of stretching and strengthening exercises, and can help you work it into your child’s daily routine. “Your physical therapist is your best friend,” says Dr. Onel. “They know how to make this fun, and they are really good at it.” 
 
 For younger children, a PT can show you how to strategically play with your child so they work the right muscles—by having them squat to retrieve an object, for example, or climb stairs. Because JIA pain can lead younger children to alter their movements to compensate for their discomfort, growth and development can be impacted, putting them at risk for muscle imbalances and loss of strength and mobility, says Dr. Hsu. Physical activity can help prevent these issues. Keep in mind if your child has adapted to move in a certain way, you may need to help her retrain her body to use affected joints. For example, if she’s adapted to favor one leg over the other, you and your PT may need to remind her to use both legs, Dr. Hsu says. Simply say, “Your right knee doesn’t hurt anymore, so you can start using that.” 
 
 It can be a challenge to get any teenager to exercise, much less one who’s achy or tired. But movement actually nourishes the joints and can help adolescents feel better. Help motivate your child to exercise by reminding him how much better he or she feels afterward, says Julia Zhang, M.D., a pediatric rheumatologist at the Floating Hospital for Children at Tufts Medical Center in Boston, MA.. For teens who may be deconditioned or who are unmotivated, seeing a physical therapist is a safe, effective way to introduce them to an exercise routine, she adds. 
 
 Expect your child to go once or twice a week for 6 to 12 weeks before “graduating” to do home exercises on their own. You may return for a follow-up every few months, to see if adjustments are needed. Once they notice those positive effects, they’ll likely seek to re-create them on their own by continuing to exercise, motivating them long-term. But one word of caution: Whatever you do, don’t call your kid lazy if it takes them some time to get into an exercise routine, says Dr. Zhang. Stay positive and supportive while your kid is, yep, working it out. 
 
 (One last note: Depending your child’s pain level, you may also consider seeing __an aquatic physical therapist__, who prescribes special exercises to do in a pool, since water workouts put less stress on the joints.)

- __An occupational therapist.__ If your child has hand pain and struggles with fine-motor tasks like writing, typing, or buttoning clothes, an occupational therapist can teach strategies for performing these daily tasks so they don’t hurt as much. For example, an OT might suggest your kid try writing with a thicker pen or eating with bigger utensils, which don’t require a tight grip. Or an OT can teach your child how to use technology tools like “talk to type” apps to decrease the need for nimble fingers on a keyboard. An OT will also determine if a wrist splint, which can help immobilize the wrist and reduce pain and swelling in the wrist, fingers, or both, would be helpful, and even have one custom-made for your child. 
- __A behavioral psychologist.__ If chronic pain is affecting your child’s mood, try a behavioral psychologist who specializes in pain to teach you and your child coping strategies to mitigate the pain’s effect on your child’s mood, says Dr. Sova. Research suggests that these interventions can reduce pain’s intensity, frequency, and duration in children with chronic pain conditions. These strategies can include cognitive-behavioral therapy (CBT), mindfulness, and distraction techniques, where your child is asked to focus on something—like mental images—thus drawing attention away from the pain. The more we pay attention to the activity, the less we focus on the pain, Dr. Sova says. “Pain doesn’t go away, but it shifts into the background.” Depending on your child’s needs, he/she may see a behavioral psychologist for a few months to a few years. 
- __A psychiatrist.__ Kids with JIA are at greater risk than healthy kids are for depression and anxiety, according to a 2019 study review. If your child seems unusually irritable or angry, sad, or socially withdrawn, then a psychiatrist may be appropriate, says Dr. Sova. A psychiatrist can diagnose and treat specific mental-health issues. 

## Work Directly With Your Child’s School

It’s important to have a game plan in place for your child during the school day. So, be proactive, says Dr. Hsu. [Let your child's school know that he or she has JIA and may need some accommodations](https://www.healthcentral.com/article/school-success-tips-juvenile-idiopathic-arthritis). 

Many kids with JIA can benefit from what’s called a [504 Plan](https://www2.ed.gov/about/offices/list/ocr/504faq.html), a formal plan that schools develop to give kids with disabilities the support they need, says Dr. Hsu. 

To set one up, you’ll want to request a 504 Plan in writing and arrange to meet with school staff, perhaps a guidance counselor, principal or vice principal, and one or more of your child’s teachers. Pro tip: Ask that the school nurse (if the school has one) be included in the meeting, as well, says Dr. Hsu.

In advance of the meeting, get written notes from your child’s medical care team detailing the child’s issues and providing suggestions for school accommodations. Be sure to do some brainstorming of your own, too. 

Here are some accommodations you might want to request: 

- Allowing your child to arrive at school a little late
- Allowing extra time for your child to get to classes
- Letting your kid type, record, or give answers verbally instead of writing
- Providing extra time to complete tests or assignments
- Letting your child get up and move around during class
- Giving your child the option to sit out or modify activities in gym class at their discretion
- Providing an extra set of books for your child to keep at home (so they don’t have to lug a heavy backpack to and from school every day)

Even if the school can’t meet every one of your requests, you should be able to work together to benefit your kid as much as possible, says Dr. Hsu. And, be sure to pick a contact person at the school with whom you can follow up to see if the plan is working.

If your child needs extra help, you can also ask for an [Individualized Education Plan (IEP)](https://www2.ed.gov/parents/needs/speced/iepguide/index.html), which goes further than a 504 Plan by providing specialized programs or services, like physical and occupational therapy. (For example, a child who struggles with writing might work one-on-one with an occupational therapist while the rest of the class practices handwriting.) The process to get an IEP is more involved than it is for a 504 and requires a comprehensive evaluation by the school to determine if your child is eligible. 

Need help? Many hospitals and pain clinics employ social workers who help parents advocate for their children at school. Ask your doctor to connect you with one. 

## Start Moving First Thing 

Now, for a few lifestyle tips. For kids with JIA, morning stiffness can make getting out of bed and moving extra hard, says Dr. Zhang. It can take anywhere from 30 minutes to an hour (or longer) for that stiffness to go away. The best way to combat that is by getting an early start. About an hour before your child has to wake up, try placing a heated blanket on your child’s stiff joints (or use an electric blanket with a timer), because warming the joints can help loosen them. Another option: Have your child start the day with a warm shower. You might also try giving your child a little extra time to move around in the morning, says Dr. Zhang. Stiffness gets better with movement. So, once your child gets moving with the day, encourage them to keep at it—and that includes your PT-sanctioned daily exercises to maximize mobility and decrease stiffness and pain.

## Develop a Sleep Routine

Up to 75% of JIA patients report at least some fatigue, contributing to low mood, high stress, and lower quality of life. Proper sleep is key. Having a good sleep routine can help by training the brain to associate the routine with bedtime, says Dr. Sova. 

Rule number one: Ditch the screens an hour before bed—no TV, no computer, no phone, says Dr. Sova. Research shows that nighttime exposure to light—in particular the “blue” light emitted by electronic devices—can disrupt the body’s release of the sleep hormone melatonin and may lead to poor sleep. Plus, viewing stimulating content before bed can alert the brain, disrupting sleep. Suggest more-relaxing activities like reading or listening to music or a podcast.

You can also try leading your child in relaxation exercises—ask your behavioral therapist for ideas, or [find sample exercises here](https://www.thecomfortability.com/blogs/guided-exercises-mindfulness), from Comfort Ability. 

Stick to your routine even on the weekends, Dr. Sova says. If your kid complains—which all kids are wont to do (JIA or not) about a standard bedtime—remind them of the positive effects, like how sleep impacts their day and life, and helps them better function. (Again: Positive reinforcement is your friend.) Just be sure to give the routine a chance to work. “Creating good sleeping habits is a process, and different tools work better for some patients than others,” he adds. Be patient. It may take a couple of weeks before your child notices improvement.

## Connect With Other Families Who Have Kids With JIA

Because JIA is not well-known, children who have it often feel isolated. Take one of Dr. Onel’s patients, who told her he believed he was the only one in the world with the condition. “What I couldn’t tell him,” Dr. Onel says, “was that I was taking care of one of his classmates.” 

Consider joining support groups, events, or programs. Meeting other kids with JIA can help your child feel less alone. The Arthritis Foundation, for instance, hosts [JA Camps](https://www.arthritis.org/events/ja-camps) across the U.S., where kids with arthritis can meet other kids like them. (Virtual camps are on offer in 2020.) “They’re staffed by medical professionals,” says Dr. Hsu, “but, really, the kids aren’t interested in talking to the counselors. They’re interested in meeting each other.” Dr. Hsu recalls one young girl comforting another child before getting a shot, and watching parents commiserate and swap tips. 

If your child is 10 or older, you may also consider [Comfort Ability](https://www.thecomfortability.com/pages/about-us), a one-day program held at health centers across the U.S. (plus some offerings in Canada and Australia) where adolescents and parents learn strategies for dealing with chronic pain. Some locations—including the Kennedy Krieger Institute in Baltimore, where Dr. Sova works—are providing virtual workshops.

## Instill Hope in Your Child

When you’re a kid, hearing that you’ll be on medication for the rest of your life can be tough. So, try framing it another way. Dr. Hsu tells her patients that with new research and treatments coming out all the time, a cure may very well be on the horizon. (She likes to reinforce her point by referencing the many TV commercials for new medications—which resonates with children familiar with such ads.) Dr. Onel agrees that finding a cure in her patients’ lifetime is very possible. “My patients are very little,” she says. “If you think about how far we’ve come in the last 30 years, [it's] one hundred percent.” In the meantime, the vast majority of kids with JIA do find a treatment that works for them, preventing any permanent damage from occurring. And, many go into remission and lead long, healthy normal lives, she says. 

## Parents: Learn to Let Go

As your child gets older and starts to develop an identity, he or she probably won’t want to be known as “the kid with arthritis.” But making their childhood as normal as possible can mean not giving into your own anxieties, Dr. Onel says. “Your first instinct is you want to hold them close. You don’t want them to do anything that gets them injured,” she says. But the fact is, overprotected children may not perform as well in life, she adds, if they never get a chance to develop the resilience and confidence needed to succeed. So ask your child’s doctor about your kid’s limitations. If the doc gives you the green light, encourage your child to try different activities and go out with friends. “You want that real life waiting for them,” Dr. Onel says. “I say this as a mother: Some people just know how to let their kids soar, even when they’re scared. We could all learn a lesson from them.”

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From assembling a care team to trying cognitive-behavioral therapy and working directly with your child’s school, here are some strategies to help your kid thrive with a juvenile idiopathic arthritis diagnosis.

Coping With JIA

Try these expert insights to combat the pain, fatigue, and anxiety that can come with juvenile idiopathic arthritis.

Smart Tips to Help Your Kid Cope With JIA

- __Juvenile Idiopathic Arthritis:__ The Arthritis Foundation. (n.d.). “Juvenile Idiopathic Arthritis.” [arthritis.org/diseases/juvenile-idiopathic-arthritis](https://www.arthritis.org/diseases/juvenile-idiopathic-arthritis)
- __504 Plans:__ Kid’s Health. (n.d.). “504 Education Plans.” [kidshealth.org/en/parents/504-plans.html](https://kidshealth.org/en/parents/504-plans.html)
- __IEPs:__ Kid’s Health. (n.d.). “Individualized Education Programs (IEPs): Tips for Teachers.” [kidshealth.org/en/parents/iep-teachers.html](https://kidshealth.org/en/parents/iep-teachers.html)
- __JIA and School:__ Stanford Children’s Health Hospital Educational Advocacy Liaisons (HEAL). (n.d.). “Returning to School Handbook.” [stanfordchildrens.org/content-public/pdf/returning-to-school-english.pdf](https://www.stanfordchildrens.org/content-public/pdf/returning-to-school-english.pdf)
- __JIA and Fatigue:__ *Seminars in Arthritis and Rheumatism*. (2016). “Fatigue in Patients with Juvenile Idiopathic Arthritis: A Systematic Review of the Literature.” [sciencedirect.com/science/article/abs/pii/S0049017215002693?via%3Dihub](https://www.sciencedirect.com/science/article/abs/pii/S0049017215002693?via%3Dihub)
- __JIA and Depression/Anxiety:__ *Open Access Rheumatology: Research and Reviews*. (2019). “Depression And Anxiety In Patients With Juvenile Idiopathic Arthritis: Current Insights And Impact On Quality Of Life, A Systematic Review.” [dovepress.com/depression-and-anxiety-in-patients-with-juvenile-idiopathic-arthritis--peer-reviewed-article-OARRR](https://www.dovepress.com/depression-and-anxiety-in-patients-with-juvenile-idiopathic-arthritis--peer-reviewed-article-OARRR)  
- __Psychological Therapies for Chronic Pain in Kids:__ *Children*. (2017). “Evidence-Based Psychological Interventions for the Management of Pediatric Chronic Pain: New Directions in Research and Clinical Practice.” [mdpi.com/2227-9067/4/2/9](https://www.mdpi.com/2227-9067/4/2/9) 


Expert Strategies to Help You and Your Child Cope With JIA

- __JIA Symptom Information:__ National Institutes of Health. (2020). “Juvenile idiopathic arthritis.” [ghr.nlm.nih.gov/condition/juvenile-idiopathic-arthritis](https://ghr.nlm.nih.gov/condition/juvenile-idiopathic-arthritis)

- __Sleep Recommendations for Kids:__ The National Sleep Foundation. (2020.) “How Much Sleep Do Babies and Kids Need?” [sleepfoundation.org/articles/how-much-sleep-do-kids-need](https://www.sleepfoundation.org/articles/how-much-sleep-do-kids-need)

- __Sleep and JIA:__ Arthritis Foundation. (2020.) “How JIA Can Impact Sleep.” [arthritis.org/health-wellness/healthy-living/managing-pain/fatigue-sleep/how-ja-can-impact-sleep](https://www.arthritis.org/health-wellness/healthy-living/managing-pain/fatigue-sleep/how-ja-can-impact-sleep)

- __Facts About JIA Flares:__ Arthritis Foundation. (2020.) “Flares and JIA: What You Should Know.” [arthritis.org/health-wellness/healthy-living/managing-pain/pain-relief-solutions/flares-and-jia-what-you-should-know](https://www.arthritis.org/health-wellness/healthy-living/managing-pain/pain-relief-solutions/flares-and-jia-what-you-should-know)


Take Medications on Schedule

Take Steps to Avoid Other Illnesses

Reduce the Risk of Injury

Track the Symptoms Closely

Get Quality Exercise—or Gentle Movement When Flaring

Eat a Healthy Diet

Use Over-the-Counter Pain Relief

Use Heat, Cold, and Other Soothing Measures

Prioritize Rest

Encourage Your Child to Listen to Their Body

*“I wish I was in heaven with Pappy.”*

In 2011, Mariah Aquino-Truss’s 5-year-old body was so wracked by agonizing pain from juvenile idiopathic arthritis (JIA) that she uttered those eight words to her mom, whose own father had recently passed away. Today, Mariah is a thriving high-school freshman who loves dancing, gardening, and making Tik Tok videos. She is also nearly pain-free and devotes much of her time to advocating for other kids with JIA. Her main message to them, some of whom remind her of herself when she issued that desperate plea: “There’s always hope and a ton of other people out there for you. You’re not alone.”


Mariah Aquino-Truss's experience being diagnosed and thriving with juvenile idiopathic arthritis

Mariah Aquino-Truss video

## Searching for Answers

At age 3, Mariah began experiencing neck pain that would come and go without warning. Two years later, she developed left leg pain severe enough to cause her to walk with a limp. The pediatrician couldn’t find anything wrong and, after a week of watching-and-waiting, referred Mariah’s family to an orthopedic specialist whose next available appointment was several months away. By the time Mariah’s mom, Tory Aquino-Sims, brought her in, Mariah had developed a 13% curve in her spine, rendering one leg an inch-and-a-half longer than the other. “That doctor did testing and said he couldn’t find anything to operate on, and that Mariah could ‘resume normal function.’ I said, ‘No. My daughter can’t walk. She can’t sleep. She’s lost five pounds and she was only 35 pounds to start with. She cannot ‘resume normal function.’”

At the orthopedist’s suggestion, Tory made an appointment with a rheumatologist at Pittsburgh Children’s Hospital in September of 2011. “As soon as he saw her–her swollen hip, her limp, the inflammation visible on her scans–he knew what it was,” she says. The diagnosis: polyarticular spondyloarthropathy, a form of JIA that impacts the joints, ligaments, and other connective tissues. Her spinal curvature had resulted from severe inflammation and fluid build-up in Mariah’s right hip, which forced it to sit higher than the right. 

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Mariah mom-remedyPittsburg2020-1031

At that point, pain had prevented Mariah from walking for three months; her mom would carry her or push her in a stroller. When driving, Mariah would ask her mom to avoid “Arthritis Hill”–a bumpy hill near their home–on particularly painful days. Then came the comment about joining Pappy in heaven, which sent Tory dashing into the bathroom where “I cried my eyeballs out. We have all these hopes and dreams for our kids, and then you get hit with a diagnosis like this and wonder, ‘What will it mean for her? Will my baby be in a wheelchair? Will she be able to get a job?’”

After the diagnosis, a then-5-year-old Mariah began a regimen of steroids and a disease-modifying anti-rheumatic drug (DMARD). The steroids caused their trademark “moon face” chubby cheeks, which made it tricky for the normally chatty Mariah to speak at times and left her so hungry that Tory once found her in the middle of the night eating a rotisserie chicken as everyone else slept. 

But the pain lessened dramatically. After about 12 weeks of her medication regimen, Mariah stopped taking the steroids but remained on her DMARD. Freed from some of her pain, Mariah and her family dove into advocacy and fundraising, guided by the Arthritis Foundation (Tory had contacted the local Pittsburgh office for guidance post-diagnosis.) 

## Finding a New Calling
In 2012, about 20 friends and family members joined Mariah for the [Walk to Cure Arthritis](https://www.arthritis.org/events/wtca) 5K under the team name Mariah’s Movers. The following year, Mariah attended her first [National Juvenile Arthritis Conference](https://www.arthritis.org/events/ja-conference). It was a game-changer. “Mom, there are so many kids just like me,” Tory recalls her saying. That sense of community continued at JA Camp in the summer of 2016.

At one point, the Arthritis Foundation encouraged Mariah and her bestie big sister, Mauriauna, to hold an assembly for their middle school to educate students and teachers about JIA. “I felt pretty alone,” Mariah says. “Not a lot of people understood [my condition.] Sometimes I’d bring a walker to school to sit on, and people would ask me questions but not fully understand. I once asked a teacher if I could sit on it while everyone was standing or sitting on the floor. She told me, ‘You’re fine. If you sit down, I’ll need to send you to the nurse’s office.’ But I knew I didn’t need to go to the nurse’s office. So during the assembly, I explained, ‘I’m usually in pain, and you can’t see it.’”   


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Mariah family-remedyPittsburg2020-1050

Eventually, Mariah and Tory also created the [Mariah’s Movers](https://www.facebook.com/Mariahs-Movers-610966522262921) Facebook page to connect families touched by JIA, posting inspirational JIA-related news, clinical trial and survey info, and creating JIA Awareness Facebook profile frames for followers featuring their photo, which they can then use for their own advocacy purposes.  

Tory says this sort of peer-to-peer advocacy lit a fire in her daughter. In an article on the Arthritis Foundation website titled, “A Family of Warriors,” Tory says, “This movement is bigger than her–this is her way of gaining power over arthritis. In school, she’s an active leader, she tries to help other kids…who have disabilities and special needs. But in the arthritis community, she loves to talk to kids all over to let them know that someone else is out here who knows what it’s like. Mariah now has in-person friends her own age who have arthritis, but there are many kids out there who don’t. Now they can find her on Facebook and know that someone understands what they’re going through.”

## A Second Autoimmune Diagnosis and a Disappointing Flare-up

In 2013, Mariah began experiencing stomach pains and nausea after eating. At first, she thought they might be a medication side effect but her rheumatologist ruled that out and sent her to a gastrointestinal doctor, who suggested going dairy-free. When that didn’t help, the doctor mentioned it could be Celiac disease, an autoimmune disease in which the immune system mistakenly attacks the small intestine when foods containing gluten–primarily found in wheat, barley, and rye–are ingested. Based on her bloodwork, Mariah was diagnosed with Celiac and advised to go gluten-free.

It’s thought that about one in four patients with an autoimmune disease will develop an additional autoimmune disease. Tory says the new diagnosis felt defeating initially, and cutting out gluten was difficult for this pasta-loving Italian family. And Mariah experienced an arthritis flare when she first cut out gluten (Tory thinks it was related). But after three to six months, Mariah’s GI issues had abated.

In 2016, Mariah, Mauriauna, Tory and Tory’s mom, Tina Aquino, were attending the annual Juvenile Arthritis conference, one of their favorite events of the year. Mariah had been off steroids for five years and was doing well. One night, while walking to dinner with family and friends, Mariah felt pain in her ankle. Ankle pain wasn’t necessarily a new phenomenon for her–“I’d had it occasionally in the past but was fine with naproxen,” she says–but this pain seemed to be growing by the hour. A few days later, Mariah was off to JA camp with friends but “was miserable. My neck and shoulder hurt during archery, then I couldn’t sleep, which for me is usually a sign that a flare is coming.”

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Mariah flare-up-remedyPittsburg2020-1021

Back home, Tory took Mariah in for an MRI, to assess whether any permanent damage had occurred in her joints and to confirm that she was indeed in the midst of an active flare. “I remember waiting in a rocking chair,” Tory says, “praying we had been making the right decisions with her treatment.” Fortunately, the scan revealed no worrisome damage.  

The flare took a toll on Mariah’s emotional health, nonetheless. “When she has a flare, she doesn’t sleep, she gets depressed and super emotional,” Tory says. “And instead of complaining about the pain, she lashes out.” The uber-tight mother-daughter pair work through it together, with mom constantly reminding Mariah, “You have to be in charge of yourself and advocate for yourself.” Tory will sometimes offer suggestions: “Are you in pain? Is that why you’re acting like this?” and, in time, that can be enough to prompt some inner reflection and help Mariah feel calmer.

## Looking Towards the Future

Today, Mariah (nickname: Ri-Ri, rhyming with “Eye-Eye”) is the typical teenager when it comes to lots of things: She’s into hip hop, musical theater, and social media, and will happily snooze past noon any chance she gets. Her pain is well-managed and while she still gets sore from time to time, “It’s not bad,” she says. Mariah also spends lots of time with Grandma Tina, a.k.a. Nunny. 

They garden together (sunflowers, strawberries, and blueberries were in the summer 2020 garden) and Nunny’s love of plants has inspired Mariah to possibly study botany in college. Nunny also happens to live with arthritis, only in her case, it’s age-related osteoarthritis. Even though the two forms of the disease are very different (Mariah’s is auto-immune; her grandmother’s is not), they’ve still bonded over it. “We’ll make jokes over it,” Mariah says. “I’ll tell her, ‘It’s all your fault.’”

Life during COVID has seen the new high school freshman staying home most of the time; because her immune system is compromised by the JIA, the stakes of catching the novel virus are even higher. “When I get sick, I get super sick and it stays for weeks,” she says. A bright light has been that Mariah has been able to see her best friend Zoey, who “doesn’t go anywhere either. We’re a pod. We drink coffee, hang out, dance. She doesn’t have JIA, but she listens anytime I’m having bad day, she’ll come over, sit in my bed with me, and make me laugh.”

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Mariah sister-remedyPittsburg2020-1153

Then there’s the best friend she shares that room with–Mauriauna. “We are inseparable,” Mariah says. They sing a capella, play ukulele, draw, and make Tik Tok videos together, and steal clothes from each other (at 15, Mauriauna is just a year older). Big sis has also attended numerous JIA conferences, helped fundraise, and even given her little sis shots on occasion. Even though “I’ve sometimes felt left out, like a lot of attention was on her, I don’t mind it now.,” Mauriauna says. “I get to see her share her story with people. It’s inspiring seeing how much she’s grown.”

As for Tory, this professional hearing-aid fitter never thought she’d one day become a parent advocate for JIA, but the role suits her well. Early on, she found her inner Mama Bear coming though in situations where Mariah was being treated unfairly, like that teacher who refused to let her rest during class. (“We had kind words with that teacher. I said, ‘I’m certain you forgot, I’m certain you didn’t mean anything by it, but this is how you made my child feel.”) And when she and Mariah are invited to speak on-camera for various news stations, her desire to educate the public shines through.

During a July 2017 Juvenile Arthritis Awareness Month segment for CBS Pittsburgh, she managed to weave in several key talking points, including a succinct explanation of JIA (“[Mariah’s] immune system doesn’t know what to attack, so as opposed to attacking foreign invaders, it attacks her joints”); some surprising statistics (“Rheumatic diseases are more prevalent than muscular dystrophy, cystic fibrosis, and juvenile diabetes combined; there’s more than 300,000 kids in United States with arthritis”); and the important note that JA is “not the same as your grandpa’s arthritis,” meaning it’s not a gradual wearing out of one’s joints.

Her favorite thing: watching Mariah just be a teenager. “When I see her thriving, it brings me joy. We really enjoy the things most people take for granted. We just look at life differently. We consider ourselves really lucky because we know people who have failed treatment.”

For now, much of Mariah’s family’s advocacy work is going virtual. Mariah’s Movers Carnival, the family’s annual fundraising carnival featuring kid-friendly activities like pony rides, bounce houses, arts and crafts, and live music, is on hold, but they were able to raise $4,000 in donations this summer through friends and family, bringing them to more than $30,000 in total over the years. (Other advocacy highlights have included being named the 2012 Pittsburgh Walk to Cure Arthritis youth honoree and the 2017 national Walk to Cure Arthritis youth honoree; Mariah has also traveled to Harrisburg, PA, and Washington, D.C., each year since 2015 to advocate for improved access to care for people with arthritis.) And they’ll keep plugging away, because Tory and Mariah both know all too well what it feels like to be “in that dark tunnel after a diagnosis, looking for the light. The pain is not going to last forever, and that’s what I tell other moms we meet through Mariah’s Facebook page and at JA conferences.”

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Mariah dance-remedyPittsburg2020-1094

Next on the horizon: Mariah is about to become a big sister for the first time; Tory is due to deliver a baby girl in October. 

In a Facebook post for Mariah’s recent 14th birthday, Tory called her *“my warrior princess…my firecracker…one of the bravest, strongest kids I know. She is kind but fierce. Sassy but sweet. Stubborn but caring. She protects what she loves at all costs. And advocates for what is right. She’s not afraid to stand up and fight for what she believes in. I cannot wait for your future.”*

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Mariah Aquino-Truss was diagnosed with juvenile idiopathic (JIA) arthritis when she was just 5 years old. Since then, she's been using her experience to raise money and awareness for other kids with this lifelong chronic condition. 

JIA Healthumentary

Instead of holding her back, Mariah Aquino-Truss's juvenile arthritis has only propelled her forward. 

This Teenager Is Stronger Than Her Juvenile Arthritis

- __The Diagnosis: Polyarticular Spondyloarthropathy:__ Arthritis Foundation. (2017). “A Dream Come True – Meet Our 2017 National Youth Honoree Mariah Aquino-Truss.” [blog.arthritis.org/stories-of-yes/mariah-aquino-truss-2017-walk-cure-arthritis-national-youth-honoree/#more-646](http://blog.arthritis.org/stories-of-yes/mariah-aquino-truss-2017-walk-cure-arthritis-national-youth-honoree/#more-646)

- __About One in Four Patients:__ *Maedica* (Buchar). (2010). “Multiple autoimmune syndrome.” [ncbi.nlm.nih.gov/pmc/articles/PMC3150011/#:~:text=another%20autoimmune%20disease.-,About%2025%20percent%20of%20patients%20with%20autoimmune%20diseases%20have%20a,cause%20disorders%20of%20immune%20regulation](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3150011/#:~:text=another%20autoimmune%20disease.-,About%2025%20percent%20of%20patients%20with%20autoimmune%20diseases%20have%20a,cause%20disorders%20of%20immune%20regulation)

- [Article on the Arthritis Foundation website](http://blog.arthritis.org/stories-of-yes/mariah-aquino-truss-juvenile-arthritis/) titled, “A Family of Warriors”

- __Article on Arthritis Foundation.__ (2015). “A Family of Warriors: How Mariah Aquino-Truss and Her Family Fight JA.” [blog.arthritis.org/stories-of-yes/mariah-aquino-truss-juvenile-arthritis/](http://blog.arthritis.org/stories-of-yes/mariah-aquino-truss-juvenile-arthritis/)  

- __Juvenile Arthritis Awareness Month Segment:__ CBS Pittsburgh. (2017). “July Is Juvenile Arthritis Awareness Month.” [youtube.com/watch?v=vcsnw7OByeA](https://www.youtube.com/watch?v=vcsnw7OByeA)


Patient Story: This Teen Is Fighting for Kids With Juvenile Idiopathic Arthritis

- __JIA Overview:__ Gillette Children’s Hospital. (n.d.) “What Is Juvenile Idiopathic Arthritis?” [gillettechildrens.org/conditions-care/juvenile-idiopathic-arthritis-jia](https://www.gillettechildrens.org/conditions-care/juvenile-idiopathic-arthritis-jia) 
- __Camps for Kids:__ Arthritis Foundation. (n.d.). “JA Camp.” [arthritis.org/events/ja-camps](https://www.arthritis.org/events/ja-camps)
- __Physical Activity for JIA:__ *Pediatric Rheumatology Online*. (2016). “Physical Activity in Children with Juvenile Idiopathic Arthritis Compared to Controls.” [ncbi.nlm.nih.gov/pmc/articles/PMC4936199/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4936199/)


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Back-to-school means lugging around heavy backpacks full of textbooks and scribbling out notes and test answers—and, for those stuck distance-learning because of COVID-19, long hours hunched in front of computer screens. But what if your back and shoulders are inflamed, or your finger joints are too sore to take notes during a lecture? This is often the reality for kids with juvenile idiopathic arthritis (JIA).

JIA is an autoimmune condition that involves inflammation of the joints, and the resulting symptoms—including pain, stiffness, and fatigue—can be obstacles for students, whether that means keeping up with assignments or making friends. We’ve asked experts for tips you can employ to help your child with JIA thrive this school year. Here they are:

## 1. Make Sure Your Child’s Treatment Is Working

Well-managed JIA gives your student a better shot at conquering all the typical school activities, which is exactly what every parent wants for their child. It starts with working with your child’s rheumatologist to come up with the best treatment plan, then checking in regularly to make sure everything is going smoothly. A big part of this is making sure your child is taking their JIA medication as directed to help [reduce the risk of flares](https://www.healthcentral.com/slideshow/treating-flares-juvenile-idiopathic-arthritis), says Amir Orandi, M.D., pediatric rheumatologist at the Mayo Clinic in Rochester, MN. “I always encourage parents to use a lot of supportive tools to help with medication adherence, whether that be reminder apps or setting an alarm,” says. Dr. Orandi. If your child is old enough, you can encourage them to take part in setting these reminders themselves to build the habit.

You can also be proactive by getting to know your kiddo’s typical symptoms and the signs that they may be entering a JIA flare, says Dr. Orandi—that way, you can help bring down a flare as quickly as possible.

“If symptoms are getting worse over a few days, I always ask the patient to let me know,” he says. The doctor can evaluate their joints and adjust medication if needed.

## 2. Communicate With the School Early and Often 

It’s tough for a teacher to help with symptom-related struggles in school if they don’t fully understand your child’s needs. Taking the time now to educate your child’s school about their JIA can save a lot of headache throughout the school year. The good news is most teachers and school administrators are happy to work with you to improve your kiddo’s experience.

“Because teachers cannot see child arthritis the same way they can see a cast for a broken leg, it may be necessary to educate them about juvenile arthritis and ask your doctor what specific accommodations the school should be required to provide,” says Diane Brown, M.D., pediatric rheumatologist at Children’s Hospital Los Angeles. “That may include things like not being asked to run the mile in the specified time when arthritis is impeding your running, being allowed use of a keyboard, or being given extra time to hand write an essay exam.” 

To help with this process, consider looking into setting up a 504 Plan or Individualized Education Plan (IEP) for your child, recommends Dr. Orandi. These plans help ensure that the school recognizes the child’s disability and will provide special accommodations or services. “This gives the parents some ammunition,” he says. “That way [teachers] can’t mark a child tardy if they have stiffness in the morning and it takes them time to warm up, and they won’t be dinged if they have to miss school.”

Physical activities in school, like gym class, may pose unique struggles for your JIA kiddo, too—requesting accommodations here is wise, especially if there are mandatory physical-testing requirements that may be difficult for your child, like running the mile or doing a flexibility test. “Teachers should work with them to come up with a modified activity,” Dr. Orandi says. “These kids want to move because they know it helps them—they just want to be able to choose the activity.”

That said, when JIA treatment is working and your child’s symptoms are well-managed, there are likely plenty of activities they’ll be able to do with the class—and they’ll likely *want* to be out there doing the same thing as everyone else whenever they feel up to it.

“Teachers should encourage the student to do all of the things that their peers do when they are having good days, and not assume that the child with arthritis is incapable always,” says Dr. Brown. “And they should be understanding for the bad days when children cannot do the same thing that they were able to do the day before.”

Not sure where to start when it comes to educating your child’s school? “The [Arthritis Foundation](https://www.arthritis.org/getmedia/4fee18c7-7c56-4bfa-8951-fccf7c16aad0/ja-teachers-guide-pdf.pdf) and the [Juvenile Arthritis Association](http://www.juvenilearthritis.org/) have some good materials for sharing with teachers and schools,” Dr. Brown says.

Keep reading for more examples of accommodations your child may need.

## 3. Encourage Brain (and Body) Breaks

Sitting at desk for hours at a time—or, thanks to COVID-19, sitting in front of a screen distance-learning all day—can wreak havoc on already-achy joints for kids with JIA.

 “Arthritis affecting the back, hips, and knees can make it intensely uncomfortable to sit in one position for prolonged periods,” explains Dr. Brown. That’s why regular breaks to move and stretch to combat stiffness are key, she says. “Children with arthritis may need extra time on timed assignments so that they can physically complete the writing while taking occasional breaks to rest and stretch and rub sore joints.” This is something that can be built into your child’s 504 Plan or IEP. If working on assignments at home, setting a timer to signal “break time” can be a helpful reminder for kids who may be tempted to power through, she says. 

The usual allotted time to move between classes also may not be enough for kids having JIA flare-up—teachers should be warned that they may need a few extra minutes to make the trek across campus or use the bathroom. You may even want to request an elevator pass if stairs at school are proving taxing, Dr. Brown says.

For kids who have made the switch to distance learning, built-in breaks throughout the school day may be more infrequent than normal, says Dr. Orandi. “I’ve heard from people who have these eight-to-four schedules sitting in front of a tablet,” he says. “This is so different from school where you move between classes and have a recess break.” It’s smart to try to emulate a “normal” school-day schedule as much as possible, encouraging regular breaks for movement, he says. 

And if the school is setting an online schedule that isn’t working because of your child’s JIA—for example, back-to-back classes without breaks—don’t be afraid to speak up or reach out to your child’s rheumatologist to advocate on their behalf, he says.

## 4. Provide Tools and a Good Set-Up When You Can

Whether at home or school, there are plenty of ways to make your child’s school day and study time easier despite JIA.

The first step is finding a comfortable workspace for your child, says Dr. Orandi. “Finding the right environment to do the work in, and encouraging appropriate breaks, is important,” he says. If they’re working at home, consider investing in an adjustable standing desk or simply prop up their laptop or tablet with a couple of books so they’re at a comfortable height. Buying a supportive desk chair or adding a comfy pillow to their seat may work wonders, too. “And if you find something that works at home, you can advocate for that adaptation at school, too.”

Here are some other fixes to make life easier for kids with JIA in a school environment:

- __Ask for permission to type.__ Some kids with JIA may experience soreness in their wrists and knuckles, making it painful to take tests by hand or keep up with notetaking. “Many students find it easier to type and will benefit from having an educational plan that allows them to type assignments,” says Dr. Brown. Requesting permission to use a laptop in school can help. Looking into dictation software can also relieve the burden of having to write out assignments by hand, Dr. Orandi adds. Your child may also ask permission to record lectures to review later if note-taking is an issue.
- __Consider locker placement.__ Request that your child has a locker at a comfortable height and convenient location to their classes, suggests Dr. Brown. “[That way] they do not have to reach up or squat down when these may be difficult.”
- __Get a rolling backpack and request two sets of books.__ Shouldering a heavy backpack and textbooks can wreak havoc on tender joints for kids with JIA—a rolling backpack can help relieve the burden on inflamed backs, shoulders, and other joints, says Dr. Brown. You can also ask the school if they can provide a set of “at-home” textbooks and a set of “at-school textbooks”—that way they don’t have to carry them back and forth, says Dr. Orandi. 
- __Be prepared with pain relief options.__ Having hot and cold packs available during the school day or while doing schoolwork at home can help relief aches and pains. “These do not have to be fancy self-heating or cooling chemical packs as used in hospitals—a long sock filled with rice can go in the freezer or microwave and shape itself around the sore joint,” Dr. Brown suggests. Work with your child’s school nurse to make sure they have these things on hand—along with appropriate over-the-counter pain relievers. The best options are nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen, which help reduce pain as well as joint inflammation, says Dr. Brown.
- __Find a buddy.__ “Sometimes children with arthritis can be assigned a buddy to help them with some of these physical tasks,” says Dr. Brown.

## 5. Prioritize Mental Health, Too

Aside from JIA’s impact on your child’s school performance, the condition may also cause emotional strife for some kids—so taking steps to support their mental health is a must. “There is an important psychological impact of being different—of not being able to keep up with peers, of having to miss school to go to a physician and physical therapy visits—all of which is compounded if teachers do not believe them about their arthritis,” Dr. Brown reminds us.

Educating teachers about JIA may help with this—many times, teachers can find a way to make accommodations without blatantly singling out your child, Dr. Brown says. And education doesn’t necessarily have to stop with the adults in the room either; having your child take an active role in educating their classmates about their condition may help other kids be more empathetic and understanding. “Students teaching students in classroom presentations can be an empowering way to share information about the disease,” she suggests.

Being proactive in this way can help stave off bullies, too. It’s also a good idea to help your child practice what they might say in response to rude comments, like if someone makes fun of their need to take medication, suggests the Arthritis Foundation. If bullying does occur, encourage your child to get help from an adult, the foundation adds—teachers should be informed of all bullying incidents right away to help put a stop to it.

And speaking of other kids, your child may benefit from meeting other children who know what they’re going through—someone who knows what it’s like to need extra time for that math quiz or has to do a different exercise than everyone else in PE class.

“Networking with other children with arthritis is immensely helpful to many patients,” Dr. Brown says. “Groups like the Arthritis Foundation and Juvenile Arthritis Association can connect students with older mentors, like college students and young graduates with high school students, for example.”

Finally, many kids with chronic illness benefit from seeing a therapist, says the Arthritis Foundation. If the emotional toll of JIA is wearing on your child, talk with your rheumatologist to see if they can provide a referral.


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Child virtual school-iStock-1271957295

Whether your child is learning at home or in the classroom, these steps can help make sure this school year is arthritis-friendly. Helpful tips range from setting up a learning space that’s easy on the joints to asking teachers for permission to use tech on assignments.

JIA and School

Whether at home or in class, these smart steps can help your child work (and learn!) around juvenile idiopathic arthritis.

5 Keys to a Great School Year for Your JIA Kid

- __JIA Symptom Information:__ National Institutes of Health. (2020). “Juvenile idiopathic arthritis.” [ghr.nlm.nih.gov/condition/juvenile-idiopathic-arthritis](https://ghr.nlm.nih.gov/condition/juvenile-idiopathic-arthritis)
- __Bullying and JIA:__ The Arthritis Foundation. (2020.) “When Kids With JA Get Bullied.” [arthritis.org/health-wellness/healthy-living/emotional-well-being/anxiety-depression/when-kids-with-ja-get-bullied](https://www.arthritis.org/health-wellness/healthy-living/emotional-well-being/anxiety-depression/when-kids-with-ja-get-bullied)


Your Child’s School Year With Juvenile Idiopathic Arthritis

Muscle and joint aches are common with juvenile idiopathic arthritis. These tricks can help parents ease their child’s pain.

How to Ease JIA Pain

These soothing stretches can help children stay one step ahead of this challenging condition. 

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A Parent's Guide to Juvenile Idiopathic Arthritis

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