Caitlin Whyte (Host): Welcome to Hally HealthCast, the wellness podcast from Hally Health, your partner in helping you live your healthiest life. Every episode on our podcast addresses a new topic important to your health and well-being, bringing in doctors, specialists, and other health experts who offer advice and answer your most pressing questions.

Today's episode is all about juvenile arthritis. July is Juvenile Arthritis Awareness Month, so it's the perfect time to learn more about this major health concern. Here with us is Beth Jurkowski. She is a registered nurse and a HEDIS Medical Records Review Manager at Health Alliance in Champaign.

 Welcome, Mr. Jurkowski, and thank you so much for being with us today and sharing your knowledge and experience. You know, many people often think of arthritis as an old person's disease. But 1 in 1,000 children under the age of 16 have a form of juvenile arthritis known as juvenile idiopathic arthritis or JIA.

 For some children with JIA, symptoms will go away before adulthood, but for many it is a lifelong illness. However, it's difficult to understand the impact that JIA can have on a young person and their family without standing in their shoes. So, let's begin with a personal true life story to bring today's topic closer to home. Let's start with Maddie's story, a young girl who began developing symptoms of juvenile arthritis in December of 2019. Here with us is someone who knows Maddie's story intimately and can certainly tell it best because Maddie is her daughter. Ms. Jurkowski, will you share with us Maddie's story?

Beth Jurkowski: Absolutely. Maddie is our sweet, silly, and very active nine-year-old daughter. She is a fantastic third grade student and is very active in competitive cheerleading. Back in December of 2019 when she was five years old, Maddie had your typical mild respiratory infection in the winter. And a few weeks later, she began to complain of some knee pain. We noticed that both of her knees were fairly swollen. And in the morning, she was complaining of the pain, her legs were very stiff. She was having trouble getting out of bed and getting down the stairs. Instead of walking, she would actually kind of scoot down the stairs on her bottom. However, by the afternoon, she was back to her usual active self. She was running, tumbling, dancing around the house. She's a very active kid. So, we made a couple trips to convenient care, but each time Maddie also happened to have an illness, whether it was an ear infection or just another virus that could also explain her symptoms.

A few months later, we took her back to her pediatrician and mentioned that I thought maybe it could be juvenile arthritis, as our family has a significant history of autoimmune illnesses. And she did agree that it's a possibility, and so she ran several blood tests on Maddie, and her labs did come back in such a way that juvenile arthritis was definitely a possibility, but her labs also showed that she had another virus called Fifth disease, which, again, could cause the abnormal labs. So, her pediatrician advised us to monitor and to let her know if the symptoms persisted, you know, beyond a few more weeks. So unfortunately, her symptoms did continue and so her pediatrician did refer her to a pediatric rheumatologist.

Maddie was officially diagnosed with juvenile idiopathic arthritis or JIA as it's commonly referred to in June of 2020. She underwent bilateral joint aspirations in her knees and steroid injections. She also had to do a couple weeks of physical therapy as she had actually developed a mild contracture in one of her knees. By this time, several of Maddie's toes were also affected by arthritis and so she was started on weekly methotrexate injections.

Thankfully, Maddie actually responded to the methotrexate injections very quickly. And by September of 2020, right before her birthday, when she turned six, she was actually considered to be in what's called medicated remission, which means that there's no active inflammation on the medication. And by September of 2021, just before her seventh birthday, she was actually able to discontinue the injections and she remained in what we call unmedicated remission for almost a year and a half before her symptoms reappeared.

 In February of 2023, when she was about eight, she started to have the knee pain and swelling again and also again, after another respiratory infection, we started seeing that scooting down the stairs in the morning. But again, by evening, she was back to her cheerleading classes. So seeing those symptoms, we immediately reached out to her rheumatologist and he started her on a 20-day taper of steroids, which unfortunately didn't improve the symptoms. So, again, she had to do another knee aspiration and steroid injection, which did improve the symptoms.

So, we were okay for a little while. And then, a few months later Maddie developed inflammation again in her toes and now her fingers. So, she was started back on methotrexate since it had worked the previous time. But unfortunately, this time it was not effective. So after a few months with no improvement, her pediatric rheumatologist added Humira injections and this is where we are right now in Maddie's arthritis journey. Thankfully, despite the fact that she is in an active flare, she continues to stay positive and just be able to continue with her competitive cheer.

Host: Wow. Well, that is an incredible story, Ms. Jurkowski. Thank you so much for just being open and for sharing that with us. So, tell us about that juvenile idiopathic arthritis or JIA. What is it exactly and what causes it?

Beth Jurkowski: So in juvenile idiopathic arthritis, the body's immune system, which is actually supposed to fight off infections, instead it starts attacking the body's healthy cells and tissue. This is what causes the pain, the swelling, warmth, and stiffness, which are usually the symptoms that children that have JIA typically present with. A lot of times you will see these symptoms occur after a recent illness, such as a common cold or the flu. Similarly, arthritis flares can also be triggered by illness. So once a child has the disease and they have a cold or a virus, a flare can reoccur, such as in Maddie's case.

That being said, though, both the onset of the disease and a flare can seemingly come out of nowhere. Unfortunately, the cause of juvenile arthritis is unknown. Likely, there's probably a combination of genetics and environmental as well as the body's own immune system that leads to the development of arthritis.

Host: Hmm. Well, excellent explanation, Ms. Jurkowski. It's easy to see why we have a whole month to build awareness of this disease. But tell us, is Maddie's story typical of JIA patients and how is it generally diagnosed? What are some of the most common signs and symptoms?

Beth Jurkowski: Sure. Common symptoms of juvenile idiopathic arthritis include pain, limping; stiffness that's particularly in the morning, but actually improves throughout the day; and swollen, red, and tender joints. Some additional symptoms that sometimes are present are fever, rash, swollen lymph nodes, fatigue, or decreased appetite. Those are a little bit less common.

To diagnose juvenile arthritis, providers typically use a combination of methods including imaging, such as x-rays or MRI, a variety of blood tests, as well as a physical exam to diagnose. The x-rays and MRIs are useful for joint damage. The blood tests can often be normal in a child with JIA. So, it's really important that that physical examination and the health history and history of symptoms is so important to the provider to be able to get that diagnosis.

Maddie's presenting symptoms were pretty typical. So, her initial symptoms were the swollen knees that were painful and stiff. What triggered me to think that she had JIA originally was that she would crawl or limp in the mornings due to the pain and stiffness. But again, by the afternoon, she was running around and playing and wasn't complaining of any discomfort. Despite having some normal blood work upon her physical examination and those presenting symptoms, her rheumatologist was able to diagnose her with JIA at that first visit.

Host: Well, some valuable information there. Thank you so much, Mr. Jurkowski. Clearly, treatment has made a difference in Maddie's journey with JIA. So, can you tell us what different treatment options there are for JIA and what outcomes the medical community is seeing with these treatments?

Beth Jurkowski: Sure. Unfortunately, there is no cure for JIA, but remission is possible and some children will eventually grow out of JIA. The goals of treatment are to relieve pain, slow or completely stop inflammation, preserve the child's mobility, and also to prevent complications. There are several different types of treatment that can be used, either in combination or alone. There are several types of medications that can be used to treat JIA, one of them being the NSAIDs, which are those non-steroidal anti-inflammatory medications such as naproxen, steroids, either oral steroids or both injected into the joint, DMARDs, which are disease-modifying anti-rheumatic drugs, and those are such as methotrexate and biologics such as Enbrel or Humira. Since her diagnosis, Maddie has been treated with each of these types of medications.

One treatment that is available that she has not had at this point is infusion therapy. With JIA, it's not uncommon for a treatment that worked for one arthritis flare to not work for the next one. For example, Maddie was treated with methotrexate the first time that she responded very well to, but unfortunately did not respond to at all the second time. So also, medications can stop being effective after a period of time too. For these reasons, children with JIA will often have several types of different treatments over the years. Children with JIA also visit their rheumatologist every three to six months. Additionally, they need to have eye exams every three to six months as well, and that is to assess for what's called uveitis, which is inflammation inside the eye, which is a complication of JIA. Some children also do have to have physical and or occupational therapy well.

Host: Well, thank you, Ms. Jurkowski. That is pretty impressive how much you know about JIA now. I take it this whole journey with Maddie has made you not only a reluctant expert on juvenile arthritis, but something of a crusader for awareness of it as well. Can you tell us what support is available to the families of kids with juvenile arthritis and which support groups and organizations you've had personal experience with since Maddie's diagnosis?

Beth Jurkowski: The Arthritis Foundation has been a phenomenal resource for our family. Upon Maddie's diagnosis, her rheumatologist told us how to request what's called a power pack from the Arthritis Foundation. And this pack, which is a backpack, includes information for both parents and teachers about juvenile arthritis; a book for the child, one that's either geared toward children or geared toward teens, depending on their age; a hot or cold treatment, so that's either a wrap for the teens or, for kids like Maddie, it's CHAMP, which is a fuzzy bear that can be either put in the freezer to make it cold or it can be warmed up in the microwave, both of which to help the joint discomfort. And Maddie was just so excited to receive hers in the mail. After having a diagnosis of arthritis, having that positive of, you know, getting this present and getting this book and, you know, feeling that she could relate was helpful.

The foundation also puts on what's called the JA Family Summit, which used to be called the National Juvenile Arthritis Conference, but the name was changed since it's more of a family event. And this event is fantastic. It's held annually and allows families of children with JIA to connect, we share tips, make friends, and just have a lot of fun. It's a four-day event, and they have activities for the children, such as therapy dogs, reptile shows, yoga, dance party, glow party, mindfulness activities, so much fun. There are seminars for parents as well, as both female and male caregiver groups, sibling groups, et cetera, just tons of information for the family as well.

Our family has attended the summits in both Florida and Georgia, and are looking forward to this year's summit that's in St. Louis. And per Maddie, summit is even more fun than Disney. The foundation also has JA camps that provide a safe and secure summer camp experience for both children and teens with arthritis or other rheumatic diseases. Although Maddie's not quite ready for a sleepaway camp yet, she has expressed interest in going in another year or two. And both the JIA Family Summit and the camp, you can actually apply and get grants from the Arthritis Foundation if you're unable to pay for those.

Additionally, the Arthritis Foundation has volunteer-led connect groups by location, so based on where you live. These groups also put on fun events such as Walk to Cure Arthritis, Arthritis Family Days, and the Jingle Bell Run. And this past winter, Maddie was actually the youth honoree for the Jingle Bell Run in Normal, Illinois. So, that was a lot of fun.

One of the main things that the Arthritis Foundation does is they actually have a fellowship program that funds additional training for doctors who want to specialize in Rheumatology. This helps to address the shortage of pediatric rheumatologists that there are, as many children with JIA have to travel hours or even to a different state to see their pediatric rheumatologist due to the shortage.

Host: Wow. Well, it sounds like there is some terrific work being done all around. Thank you for those amazing resources. And I mean, better than Disney, that's a pretty good review.

Well, one final question for you today, Ms. Jurkowski, circling back to the topic of this episode and this month's theme. So, you've already shared you and Maddie's powerful story, and again, thank you so much for sharing that. I'm sure it's one that will stay with many of us for a long time to come. That being said, what do you feel is the moral of Maddie's experience for the rest of us? Or to put it another way, if you could get a message out to everyone during this Juvenile Arthritis Awareness Month, what would it be? What would you want everyone out there to be aware of?

Beth Jurkowski: I would really like everyone to be aware that kids can get arthritis too. A lot of people are not aware of that. Also, if you think your child is exhibiting symptoms, make sure you do have them evaluated. Getting the diagnosis of juvenile arthritis is not always a quick process, but hang in there and just never stop advocating for your child. If they do end up getting the diagnosis of JIA, just keep in mind that the Arthritis Foundation is full of resources and ways to connect with other JIA families that can understand what you're going through.

Host: An insightful answer to wrap up our episode here. You've definitely increased our awareness, Ms. Jurkowski, and you've been an absolute pleasure to have on our podcast. Thank you so much for joining us and for sharing with us and for all that you do every day at Health Alliance for so many people and their families.

That concludes today's Hally HealthCast. Tune in next time as we tackle yet another topic important for your health and well being. And remember, stay safe. Hally Health is your partner in helping you live your healthiest life. Visit hally.com, that's H-A-L-L-Y.com, for resources, information, tips, and much more. Let us help keep you and your family healthy and well. Thanks for listening. We hope you tune in again.