Category: Juvenile Idiopathic Arthritis

Science is Hope

Hope has always been a slippery idea for me. I was diagnosed with juvenile rheumatoid arthritis (JRA) in 1985 in St. Paul, MN. I was 18 months old, and it took months to receive a diagnosis because there was not yet a pediatric rheumatologist in my area. My early treatments consisted of aspirin, large doses of steroids, and gold shots (yes, they used to inject gold into joints!). I was regularly hospitalized, where I would be strapped to boards for blood draws and given ice baths to reduce inflammation. At home, my parents, who struggled with their own trauma histories and mental health challenges, would pin me to the floor and force dozens of medications down my throat because I refused to take them. They watched me limp in pain with little hope that things would get better. We were told that I would likely need to use a wheelchair and that I might not be able to have children or work a full-time job.

My future did not feel bright, and my adolescence was full of hopelessness. I was struggling with anxiety and depression, which went unaddressed by my parents and undiagnosed by my providers. However, somehow, my health didn’t affect my grades. I loved school. It wasn’t easy and I had to work harder than my peers in many ways (I knew nothing yet about accommodations), but I learned that I could set goals and reach them. This gave me a sense of control and productivity that I hadn’t been able to experience within my own body. These were the initial sparks of hope that allowed me to push forward.

Things started to really change in the early 2000’s when I entered college. Once I was exposed to psychology, biochemistry, statistics, physics, etc., I couldn’t get enough information. As a first-generation student, it was like I had stepped into a whole new world. The words pulled me out of a fog and for the first time in my life, I had hope that things could be different because science was moving the world forward, and me with it. I would spend hours in the library learning about my disease, medical trauma, grief, psychoneuroimmunology, identity, and meaning making, trying to understand how I had gotten there and dreaming about where I was going. With my newfound knowledge and encouragement from professors, I gained confidence and started to believe that I might also be able to give others hope through science.

However, I had a lot of doubts about whether I could physically and mentally make it through medical or graduate school. One moment shifted everything for me. I was volunteering with the Arthritis Foundation and was speaking at a family support group meeting alongside my pediatric rheumatologist. I was shocked that the parents had more questions for me than for my doctor. They wanted evidence that their kids were going to be okay. They wanted hope, and I was able to give it to them; I was living proof that it was possible to create a life in the midst of all the risks and losses. I left that meeting with a new sense of purpose and the motivation I needed to create a career dedicated to lifting patient voices.

I have now spent the last 15 years honing my craft as a social scientist and searching for innovative ways to empower patients. I have listened to the stories of hundreds of patients who face struggles with their health and the healthcare system and used this information to advocate for changes in research and medicine. I have also shared my love of science with students as a research mentor and professor, and most recently through the work of Young Patients’ AREA. Don’t get me wrong, science is not perfect, or certain, and it has caused plenty of harm over the years. However, it has saved my life in countless ways. Advances in medicine over the past 40 years have allowed me to work full-time and have a family despite my increasingly complicated health issues. Being a scientist is not only a job, but a calling where I can channel my pain and suffering into making things better for others. Knowing that I’m part of helping to move the world forward, especially when it feels like it is falling apart, even one tiny piece at a time, gives me peace of mind, and yes… hope.

My Patient Partner Journey, Part 1: Bridging the gap between research, healthcare, and patients

Being a patient partner in research means bringing lived experience into scientific spaces where decisions about care, treatment, and discovery are made. It’s about more than sharing one’s story, it’s about ensuring that research reflects the realities of those it aims to serve. Over time, I’ve found that patient partnership in research comes with a sense of both responsibility and purpose, bridging the gap between patients and clinicians, and between ideas and impact.

What It Means to Be a Patient Partner

At its heart, patient partnership is a collaboration. Researchers bring scientific expertise, knowledge of study design, data analysis, and clinical systems. Patients bring expertise of illness, daily challenges, and the human context behind the data. When these perspectives come together, research is more relevant, ethical, and sustainable.

Being a patient partner often involves joining research committees, reviewing grant proposals, co-designing studies, and/or advising on consent forms and priorities. Some patient partners serve as formal team members under compensation and mentorship structures. Others engage through community panels or advisory roles. The unifying theme is empowerment: patients contributing as collaborators instead of subjects.

My Path Through CARRA

My introduction to this work came through the Childhood Arthritis and Rheumatology Research Alliance (CARRA). CARRA is a consortium that brings together clinicians, researchers, and patient stakeholders to improve the lives of children and young adults with rheumatic diseases. As someone living with juvenile-onset rheumatoid arthritis, I was drawn to working with an organization that actively sought my patient perspective to guide research about my condition. CARRA is structured as a collaborative network of pediatric rheumatology researchers, clinicians, patients, and families. Members from each of these distinct groups are organized into research committees that oversee scientific priorities and coordinate disease- or topic-specific work groups. Each research committee is a standing group of CARRA members focused on a particular area (such as a disease or related issue), and within each committee, smaller work groups develop and advance targeted research projects.

My first experiences with CARRA were both energizing and humbling, but I quickly realized the enthusiasm for patient partnership wasn’t as deep as it sometimes appeared. Patients technically had a seat at the table in workgroups. We were invited to talk through protocols and suggest changes that could help families make sense of research participation. But patient feedback was often treated as a formality rather than a priority. When I raised questions or concerns, I could sense that the researchers and clinicians considered their professional expertise to be more important.

CARRA did invest in patient partners through orientation materials, mentorship, and travel support–and that support made a difference. Still, it often felt like patients were welcomed more for optics than for shaping the course of the research. Over time, I learned to advocate more persistently for authentic inclusion of patient voices–not just as an add-on at meetings, but woven fully into research design and decision-making.

It was intimidating at first. I had to fight to be heard and avoid getting overshadowed by the authority of doctors or researchers. Eventually, I realized that my experience had value, even if I had to keep proving it, and now more people recognize the importance of what I bring to the team.

Conference Life: From CARRA to Conferences

One of the most powerful aspects of being a patient partner is participation in conferences. CARRA’s annual meetings are intimate and interactive: working group sessions buzz with clinicians discussing clinical trials and registries, while patients remind the group what those decisions mean in real life. For me, CARRA’s meetings embody a kind of research democracy, where everyone has a seat at the table, and the measure of success is not just academic rigor, but also lived impact.

Stepping into larger professional settings like the American College of Rheumatology (ACR) Convergence was a different experience. Whereas CARRA’s meetings felt familial, the ACR conference felt vast–a convergence of thousands of rheumatologists, scientists, and patient advocates from around the world. The scale can be intimidating, but it’s also inspiring. As a patient partner, it’s humbling to realize that all of this science–the posters, plenary sessions, and symposia–is ultimately about improving lives like mine.

At ACR, I often found myself acting as a bridge: helping research teams think about patient relevance while also helping patients navigate an environment dominated by professionals. Conversations in hallways and poster sessions often turned into opportunities to highlight the importance of co-production, doing research with patients rather than about them.

Lessons and Reflections

Being a patient partner has taught me that research is not only about data collection; it’s about relationships. It’s about learning to listen as much as to speak, to balance personal experience with generalizable insight, and to understand both the constraints and possibilities of science.

For young adults with chronic illness, spaces like CARRA and ACR demonstrate that there is room for those with lived experience to shape the future of medicine. Patient partners are not token voices; they are co-creators of knowledge.

When I walk into a conference room now, whether it’s a breakout at the CARRA Annual Meeting or a lecture hall at ACR, I no longer feel like an outsider among researchers. I feel like part of the team. That, to me, is the true promise of patient partnership: it transforms the narrative from “being studied” to “being heard,” and in doing so, changes what research can achieve for all of us.

Learning and Teaching with an Autoimmune Condition

Hi! I’m Kaye Anderson. I’m 24 years old, and I’m in my first year as a 10-11 grade teacher at a rural high school. I earned my BA from the University of Wisconsin – River Falls, where I majored in English education and psychology.

Hi! I’m Makenzie Kaput. I’m 22 years old, and I’m in my first year as a 6-8 grade teacher at a Catholic middle school. I earned my BA from the University Wisconsin – Parkside, where I majored in history and secondary education.

Tell us a little bit about your diagnosis.

KAYE: I was diagnosed with Juvenile Idiopathic Arthritis at the age of 10. My journey started off with what my parents and I thought was frostbite on my toes. After it did not go away and my toes continued to swell, my primary doctor referred us to a rheumatologist. After a few appointments with tests that did not show much, I was diagnosed with JIA and pernio. 

During this time, I had a hard time in school. I was always uncomfortable, struggled to pay attention, and, often times, could not adhere to the norms of classroom behavior. Using a pencil was hard and the chunky grips did not help. So being the artist and inventor I was, I rubber-banded three pencils together. And it worked. My other accommodations were not seen as kindly by my teacher. I was assigned a yoga ball to sit on so that I could move my joints while sitting down. She saw this as a distraction and often called me out for bouncing. I was allowed to sit on a chair during circle time, but getting up to get that chair during circle time was also frowned upon. I was supposed to anticipate my needs ahead of time, which to a 10-year-old with a newly diagnosed condition, was very difficult. 

After elementary school, things got easier. I found ways to advocate for myself and learned that typing was easier than writing. I mastered the art of asking to take breaks discretely and wrote to teachers before school started to let them know of my 504 (and later on, IEP). 

MAKENZIE: I still have not been diagnosed with a specific disease, but I do know that I have some kind of autoimmune condition. I first got really sick right before my junior year of college. I had been having daily headaches for a few years at that point, and my neurologist was trying to find a balance of medication and other treatment that would help me. Unfortunately, the medicine I tried the summer before my junior year was incredibly hard on my body. I was nauseous almost every day and was finding it difficult to even make it class at all. Even when I could, I wasn’t fully present.

In October of 2022, I noticed that my hands were really swollen and my fingers were stiff. At first, I thought nothing of it because I played soccer in college and had just played a series of games in snow/very cold temperatures. When it didn’t go away after a few days, I started to wonder if something else was going on. I already had an appointment with a doctor at the Mayo Clinic for my headaches, so I figured they could give me some more insight. Unfortunately, they concluded that it was unrelated to the headaches and I would have to connect with a rheumatologist when I got back home. After that, I kept getting more and more fatigued and I was quickly losing function in my fingers, wrists, and other major joints. My feet hurt with every step. I started the long and frustrating process of getting to an autoimmune diagnosis, one that I still do not have. I went back to the Mayo Clinic in April of 2023, but they were unable to be 100% certain about a diagnosis.

What was it like managing a chronic condition as a college student?

KAYE: By the time that I got to college, I was fairly stable and did not often have flares. With that being said, the cold was extremely triggering and my medication side effects were not great. I only missed a few days of school due to pain, the other times it was due to nausea or fatigue. 

I went to college in my hometown, so my parents were able to help me out when I needed it. As we all remember covid hit in 2020, during my second semester and I was even more thankful to be living at home.

During college, I was really able to explore my identity as a chronically ill person. I signed up for accommodations right away and was told to apply to be a member of a new group of young adults with autoimmune conditions (now known as YP AREA). In this position, and as a mentor for incoming students with disabilities/accommodations, I thrived. I loved being able to guide people as they navigate college and independence while also shining a light on the intersectionality of living with a disability as a young person. 

MAKENZIE: In my junior year, I really struggled to make it to class a lot of the time. Luckily for me, I went to a smaller school and already had two years under my belt, so most of my teachers knew me and what kind of student I was. I applied for accommodations through my school’s student accessibility services department, and it was one of the best decisions I could have made. Even though I ended up not needing to use them all that much, it brought me such peace of mind to know that I could do as much as my body could handle, communicate with my professors, and still get the education that I deserved. Every school’s resources may look different, but I would highly recommend looking into services even if you think you won’t need them. It is always better to have a plan in place in case something ever comes up.

I also played college soccer for four years, and the biggest thing that taught me was to listen to my body and be okay that I couldn’t do the same things as everyone else.  At the end of the day, getting any kind of movement for your body is huge, especially with an autoimmune disease. My weight room routines looked a little bit different from the rest of my team, but I knew that I was doing what my body needed and could handle. It’s hard to accept that reality sometimes, but I think it is important for us to remember that we simply create a new reality.

What is hard for you about being a teacher with a chronic condition?

KAYE: I think the hardest part of teaching for me would be working when I am having a hard day. I have had a handful of days where I have had to teach while being extremely nauseous. These days, I find myself having to replan lessons to make sure that I am not over-exerting myself. So far, my students have been pretty understanding and I have had a few that even remember to check on me the next day to see how I am feeling.

Another thing that has been tricky to navigate is my energy level. I am able to get through the school day, but I can definitely feel that I am not as engaging during my afternoon classes. To help with this, I have been going to bed pretty early to make sure that I can put my best foot forward. 

MAKENZIE: Prioritizing is hard. There are all these things that I want to do in my classroom that I simply don’t have the energy or capacity for at this time. One of the hardest things is figuring out the balance between making everything fun and engaging for the students while also still having time for myself and not getting burnt out.

What coping strategies do you have for managing your condition in the classroom?

KAYE: I think this is something I am still working on, but right now my biggest self-care strategy is getting enough sleep. I regularly hear co-workers or students talking about how late they were awake, but I am keeping myself to a hard deadline of when I need to put work down and when I need to be asleep.

In terms of managing pain, I think it is a bit easier in my own classroom because I can move when I need to or ask students to come back to my desk to talk. During the colder months, I use a heat pack on my lower back.

To help with my mental health, I like being able to walk my dog and be outside in my garden. During the colder months here in the Midwest, I listen to audiobooks and do paint-by-numbers.

MAKENZIE: I try to always have a project or two (sewing, painting, crochet, etc) going on that I can work on when I need brain breaks. I’ve found that these types of projects are great for my mind AND great to keep my hands moving and working. Aside from that, I just ask for help when I need it. I used to really hate asking for help, and then suddenly one day I was at this point where there were things I simply couldn’t do if I didn’t have help. Over time, I started accepting that I can’t do everything by myself and that there are so many people who want to help me. Realizing that and being smart and realistic about when I need help has been a game changer.

Did you disclose your condition to your students?

KAYE: I find that being in the disability community and my work in advocacy is a big part of who I am, because of this, I felt comfortable sharing about it at the beginning of the year. I did not list specifics, but I said that I had arthritis and that I work to share research about autoimmune conditions with young adults. Later on, I found myself mentioning to some of my classes that I was having a rough day and reminded them about my condition.

MAKENZIE: I did end up sharing a little bit with my students when it came up in conversation. We had a reading lesson on a story that was teaching us to never judge someone else and always be kind because you never know what they are going through. Coincidentally, I was in a flare up at this time, and when I am my eye gets a little bit red and swollen/bruised. It looks like a black eye. The students were asking, and I knew it would be a really good way to show them first hand that you never know what is going on in someone else’s life.

When it gets cold, I also have to wear compression gloves if I want to be able to do all the things we need our hands for in a day. Since they look like motorcycle gloves lol, I fielded a lot of questions about why I wear them and what they are for.

I also wanted them to understand that there will be times we go through rough periods and it might seem like things won’t get better but they do. The fact that a year and a half ago I couldn’t even open a water bottle or the door to my own apartment by myself and now I’m a teacher with my own classroom, I want them to know that it’s possible.

Did you disclose your condition to your coworkers?

KAYE: Throughout the year, I have become more comfortable mentioning my condition to my coworkers. Some of them seem to understand it more than others. I am thankful for how understanding they are, but also worry that they see me differently when I am going through flares or dealing with medication side effects. 

Have you set up accommodations at work?

KAYE: I am currently working through the process to get a prep period in the middle of the school day. While having my own classroom means that I can make my own adjustments to be comfortable, I find that I need a period in the day where I can be more active if need be or warm up my heat pack. I think that the fatigue also plays a role here as I need some time to regroup before I go back to teaching classes. 

What makes being a teacher with a chronic condition worth it?

KAYE: I love the one-on-one interactions that I get to have with my students. I appreciate being able to take the time to walk them through a skill they are learning and joking around with them during downtime. I also love seeing students excel. It brings me so much joy to grade assignments where the students absolutely nail it.

MAKENZIE: Although they can be exhausting, the kids make it so worth it. At the end of the day, I know that I am making a difference and I can see the difference I’m making every day. I feel like I am paying it forward from all of the people who helped and cared about me when I got sick (and still now). These kids deserve someone who cares about them and wants to succeed, and it is so worth it to know that I can be that, even on frustrating days.