I have spent a lot of time in rheumatology appointments answering questions. Where does it hurt? How long does the stiffness last? Is the medication helping? What has changed since the last appointment?
Recently, I got to switch roles. As an intern with CARRA, I interviewed Rebecca Trachtman, MD, MS, a pediatric rheumatologist at Columbia University Irving Medical Center and a co-leader of CARRA’s Systemic Juvenile Idiopathic Arthritis (sJIA) Workgroup. Instead of being the patient answering questions, I got to ask them. We talked about juvenile arthritis, sports, communication between doctors and young patients, research, and some of the questions pediatric rheumatologists are still trying to answer.
For me, the conversation was especially interesting because I could listen from two perspectives: as someone interested in medicine and research, and as a teenager who has spent a lot of time on the other side of the exam room.
“Kids Get Arthritis Too”
One of the first things I asked Dr. Trachtman about was a misconception I have experienced myself: many people do not realize children can get arthritis. Her answer was simple: “Kids get arthritis too.”
When most people hear arthritis, they think of older adults and joints that have worn down over time. Juvenile arthritis is different. It is an inflammatory disease involving the immune system, and it can affect children and teenagers who otherwise look completely healthy. That misunderstanding can be frustrating because so much of juvenile arthritis is already invisible. Someone might see a teenager at school, with friends, or playing a sport without seeing the pain, fatigue, appointments, medications, or uncertainty behind it.
Letting Young Patients Speak
Pediatric Rheumatologist, Columbia University Irving Medical Center
Co-leader, CARRA Systemic JIA Workgroup
One of my favorite parts of the conversation was hearing how Dr. Trachtman communicates with young patients. She explained that pediatric medicine often involves three people: the doctor, the parent, and the patient. Sometimes she will ask a parent, “Can I hear from your child first?”
That stood out to me. Parents are obviously a huge part of a child’s care, but the young person is the one experiencing the symptoms. Dr. Trachtman believes patients should feel comfortable asking questions, describing what they are feeling, and being part of decisions about their care. She also made an important point: not every symptom is necessarily caused by active inflammation, but that does not mean it should be ignored. For anyone who has struggled to explain a symptom that other people cannot see, being listened to matters.
Getting Back to What You Love
As a soccer player, I also wanted to ask about sports. Dr. Trachtman told me, “I want kids to be active.” There may be times when arthritis is active and an athlete needs to reduce or change what they are doing while treatment is adjusted, but the goal is to control the disease so young people can return to the activities they care about.
That is something I have had to learn myself. When you care a lot about a sport, sitting out can feel like you are giving something up. Sometimes, though, stepping back is what allows you to come back. Dr. Trachtman also emphasized that treatment should take into account what matters to the patient. For one person, that might be soccer. For someone else, it could be dance, theater, hiking, or simply having enough energy to spend time with friends. Those things matter, too.
Questions Researchers Are Still Asking
Our conversation then shifted to Dr. Trachtman’s work with CARRA’s Systemic JIA Workgroup. She described several areas researchers are studying, including macrophage activation syndrome (MAS), lung disease associated with systemic JIA, and what treatments may work best when a patient does not respond to an initial therapy.
What interested me most was how many questions still do not have simple answers. Researchers are trying to understand which patients are most at risk for certain complications, whether those risks can be recognized earlier, and why patients with the same diagnosis may respond differently to treatment. That is where CARRA’s collaborative approach is so important. By bringing together doctors and researchers across many hospitals, CARRA can help study larger groups of patients, compare treatment approaches, and learn from information that one hospital alone may not be able to collect.
We also talked about CARRA’s work to modernize its registry. Before becoming involved with CARRA, I probably would have thought of a registry as just a large database. Now I understand how valuable that information can be. Following patients over time can help researchers identify patterns in treatments, outcomes, and complications. Better data can help answer existing questions and may also lead researchers to new ones.
Patient Perspective
I also asked Dr. Trachtman what advice she would give someone my age who has experienced juvenile arthritis as a patient but now wants to become more involved in medicine, research, or advocacy.
“You uniquely have that perspective from the patient’s side,” she told me.
She encouraged me to think about what helped me as a patient, what did not, and what could be improved. That made me think differently about my own experience. Patients know what it feels like to wait for an answer, explain an invisible symptom, try a medication that does not work, miss something because they do not feel well, or wonder whether they should push through pain or stop. Those experiences do not replace medical research, but they can help doctors and researchers understand which questions matter most to patients.
Keep Asking Questions
At the end of our conversation, I asked Dr. Trachtman what she wanted patients and families to remember. Her advice was simple: “Ask all your questions.”
Pediatric rheumatology can be confusing. Treatments can involve trial and error, and even after receiving a diagnosis, there may still be uncertainty about what comes next. Asking questions helps patients better understand their own care, and questions are also where research begins.
That is one of the things I appreciate most about CARRA. Physicians, researchers, patients, and families all bring different perspectives to the same problem, and each can learn from the others.
For most of my experience with juvenile arthritis, I have been the person answering the questions. This time, I got to ask them. I hope I keep doing both.
About Shaw McGrath
Shaw McGrath is a rising senior at Avenues The World School in New York City. He plays competitive soccer for Dusc MLS Next and is passionate about sports, pediatric rheumatology awareness, and helping other young people with juvenile arthritis feel less alone.
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