Research – Young Patients' AREA

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 2: ACR 2025

Presenting at American College of Rheumatology Convergence 2025 was both humbling and empowering for me as someone who lives with juvenile onset rheumatoid arthritis. Being part of the session, “Supporting Work, Supporting Health: Helping Patients with Rheumatic Conditions Stay Employed,” gave me an opportunity to share how arthritis has shaped every aspect of my journey into adulthood: from searching for jobs that would accommodate my health needs to recalibrating my career aspirations and making day-to-day decisions most people never need to think about. What I presented went far beyond statistics or clinical studies—I spoke about the hidden realities and extra calculations patients like me face, and how those experiences have influenced not only how I work, but how I advocate for myself and others.

I chose to present at ACR because it’s critical for researchers and healthcare professionals to hear directly from patients who aren’t just case studies or data points, but complex individuals whose stories offer insight that research alone can’t capture. There’s immense value in bringing together diverse voices, including patients from different backgrounds—to give context to science and remind everyone why the work they do matters in real life.

By sharing my perspective, I hope to encourage clinicians and researchers to make decisions in partnership with patients, both within clinical settings and at professional conferences. This kind of visibility makes a difference, not just in my own life, but in shaping conversations that lead to systemic change. Connecting with others at ACR, whether professionals or fellow patients, helps me feel seen and heard, and reassures me that my experiences can help inform practices and policies that support people living with rheumatic diseases.

For me, presenting isn’t only about telling my story: it’s about reminding the research and medical community that patient voices belong at the heart of the conversation, everywhere decisions affecting us are made.

Speech from ACR 2025 Session

Good afternoon, everyone.

It’s an honor to open this session. My name is Ela Chintagunta, and for 9 years, I’ve lived with juvenile-onset rheumatoid arthritis. Today, I want to show you what “work” means from inside a body with chronic illness—and all the things people don’t see.

I was thirteen when I was diagnosed. My classmates thought about the future in terms of dreams and degrees. I thought about mine in terms of what my body could physically do. At that age, you’re supposed to imagine possibilities. Instead, I began measuring limits: How long could I walk before pain set in? Could I raise my hand in class, or would my joints freeze mid-question?

But that diagnosis didn’t kill my ambitions. I became obsessed with medicine—reading textbooks, studying science, convinced that if I couldn’t fix myself, maybe I could help others. I dreamed of becoming a doctor. Through high school and college, every decision pointed toward med school, even as fatigue and flares forced me to engineer my life around my symptoms. Behind my grades was a world of calculation: Can I finish my labs before my fingers stiffen? Will my medication leave me clear-headed for exams?

As college went on, research drew me in. The MD/PhD dream became my new goal—a way to shape medicine without the physical toll of hospital shifts. But the deeper I went, the more I realized medicine’s demands weren’t designed for a body like mine. The hidden costs—standing for long periods, infection risks, late nights—made some parts impossible. A few months ago, I had to make a painful decision: pivot to a PhD only, letting go of my clinical ambitions so I could build a career I could actually sustain. That is why I am currently applying for PhD programs.

That decision wasn’t about giving up. It was about survival. Most people pick jobs based on interests and skills. For me, every role requires invisible math: Is the space accessible? Is the climate safe for my joints? Can I take sick days without guilt? Can I type, or does today’s flare mean voice dictation?

Living with a chronic condition means that work is never just work. It’s logistics: managing doctor’s appointments, negotiating with supervisors, timing medications between meetings. It’s deciding when to disclose and when to stay silent. It’s working twice as hard so my limitations don’t take center stage. It’s changing jobs, sometimes cities, to fit my body—not just my ambitions.

Right now, I’m in another transition—figuring out what sustainable work means to me, making health management a full-time job. For those without a disability, career breaks might feel voluntary. For me, they’re mandatory maintenance—rebuilding so I can move forward.

All of these adaptations, calculations, and constant negotiations are invisible to most people. But they are very real work. Chronic illness makes every task, decision, and achievement an act of strategy and endurance.

So as we begin today’s session, I ask you to remember: There’s an entire world of “work” beneath the surface for people with chronic conditions. Every job is actually many jobs—some visible, many unseen. And in those hidden negotiations, you’ll find not fragility, but extraordinary resilience and skill.

To borrow words from Star Trek Voyager and one of my favorite characters Seven of Nine:
“Survival is insufficient.”
We aren’t here just to get by—we’re here to contribute, to matter, to live fully—even if that means rewriting what work looks like, again and again.

Thank you.

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.

Sex, (Prescribed) Drugs, and Rock ‘n’ Roll: Approaching sexual and reproductive health with an autoimmune disease

On November 13th, Young Patients’ AREA hosted our second event of the year: Sex, (Prescribed) Drugs, and Rock n’ Roll: Approaching sexual and reproductive health with an autoimmune disease. In this event, we utilized a new format that included a mix of pre-recorded expert Q&A and live patient-shared experiences.

Dr. Brittany Huynh, pediatric rheumatologist and adolescent medicine specialist whose interests include reproductive health among adolescents and young adults with rheumatic and other complex chronic diseases.

Dr. Erica Brenner, pediatric gastroenterologist and clinical investigator currently investigating reproductive health among young patients with IBD.

Dr. Becca Overbury, rheumatologist with research interests in health care transition in adolescent and young adult patients with childhood and adolescent onset Rheumatic diseases.

Our experts covered a variety of topics including why having conversations about reproductive and sexual health with your disease specialist is important, strategies to start these conversations, and key points patients should know about how their disease and/or medications may interact with their sexual and reproductive health. Below are some of the highlights of what our experts spoke about, but be sure to watch the complete recording to hear their complete insights.

Talking about these topics can be awkward, and doctors know that. To help broach the subject, they recommended strategies such as asking for one-on-one time with your provider (this is also good practice for getting independent in your care!), bringing up these questions early in the appointment to ensure there is plenty of time to discuss, or sending a MyChart message ahead of your appointment if you’d like. These are super important topics to talk about because your condition DOES overlap with your sexual and reproductive health.

In terms of disease/medication interactions with sexual and reproductive health, we learned of risks of blood clots associated with certain conditions such as systemic lupus or Crohn’s disease, which may be further increased when using birth control that contains estrogen. Similarly, individuals with certain autoimmune conditions such as inflammatory bowel disease or those treated with high doses of steroids may be at higher risk of long-term bone density related side effects when using certain forms of birth control, such as Depo Provera (“the shot”). This section was incredibly informative and contained a lot of information I myself hadn’t heard about before, so I highly recommend reviewing the experts’ complete information in this section.

Experts additionally emphasized that in the majority of cases, individuals with autoimmune conditions can have successful pregnancies if they wish to do so. Experts echoed that outcomes are most successful when your condition is well controlled and recommended communicating with your doctor ahead of time to ensure your medications are safe for pregnancy. Dr. Brenner also highlighted preliminary data suggesting that individuals with inflammatory bowel disease who do have trouble getting pregnant and choose to pursue assistive reproductive technology like IVF are just as likely to have a successful pregnancy as somebody without inflammatory bowel disease.

Additionally, a key point brought up by Dr. Huynh emphasized understanding your emergency contraception options, like Plan B or ella: “This is a medicine that you can take no matter what disease you have, no matter what medications you’re taking, and it is safe. So anyone can take it.” Emergency contraception options like Plan B and ella are legal and available in all 50 states, though the more effective option, ella, does require a prescription. Dr. Huynh recommended asking your doctor for a prescription before you even need it so that you can have it on hand.

Other resources recommended by our experts:

Evidence based guidelines, such as the Reproductive Health in Rheumatic Diseases Guidelines or Preexisting Diabetes and Pregnancy Clinical Practice Guidelines
Planned Parenthood
Centers for Young Women’s and Men’s Health
Scarleteen (less gendered resource)
Bedsider (lots of information, especially regarding contraception)
The Brenner Research Lab website offers amazing resources, specifically for patients with Inflammatory Bowel Disease and their providers
And finally disease organizations and foundations or patient-led organizations also often share valuable resources regarding sexual and reproductive health

The complete recording of this event can be viewed here. All opinions expressed are the personal perspectives of these individuals and not representative of their institutions.

We thank Dr. Huynh, Dr. Brenner, and Dr. Overbury for contributing their time and expertise to this event.

Why My Story Matters: How Patient Voices Drive Research Forward

When I was first diagnosed with Crohn’s disease at twelve years old, I had no idea my life was about to split into two parallel paths: one medical, one personal. On one path were the doctors, lab results, and treatment plans. On the other were the birthday parties missed, the meals skipped, and the subtle distance between me and friends who didn’t quite understand. I was told to advocate for myself, but no one really explained how. I was asked to describe my pain, but no one told me what to compare it to. I was expected to survive it, but was rarely asked how I was living through it.

Now, years later, I realize that the small moments—the ones I didn’t think mattered—hold immense value in the world of medical research. My story, like those of countless other young people with chronic illnesses, is more than just a timeline of flares and remissions. It’s data. It’s evidence. It’s a voice that can help shape the very science we depend on.

This belief is at the heart of Young Patients’ Autoimmune Research & Empowerment Alliance (Young Patients’ AREA), a group of young people living with chronic illnesses who are working to bridge the gap between patients and researchers. We don’t just share our experiences — we translate them into insights that drive studies, fund priorities, and create patient-centered care models. Through our current work with the Patient-Centered Outcomes Research Institute (PCORI), we’re helping define what meaningful research looks like from the patient’s perspective. And that starts with telling our stories:

From Silence to Significance

For many years, patient voices were relegated to the sidelines of medical research. We were subjects, not collaborators. Our experiences were summarized in checkbox forms or filtered through clinical language. But a growing body of evidence, much of it championed by organizations like PCORI, shows that involving patients leads to better outcomes, stronger data, and more ethical research practices.

In the pediatric, adolescent, and young adult worlds, this shift is especially critical. Children, teens, and young adults often struggle to explain their symptoms, express concerns, or push back on decisions. And yet, we are the ones who live with these diseases 24/7. We know what it means to spend lunch breaks in the nurse’s office, to pack emergency kits for field trips, or to navigate adolescence with a body that doesn’t always cooperate. Our knowledge isn’t abstract—it’s lived.

Turning Experience Into Evidence

My first experience contributing to research didn’t happen in a lab or a hospital, it started when I signed up to participate in studies through Rare Patient Voice, an organization that connects patients with rare and chronic diseases to researchers seeking real-world insights. Through their opportunities, I began sharing my perspectives on what it’s truly like to live with pediatric Crohn’s. That experience opened the door for me to join conversations with other young people in Young Patients’ AREA, where we recognize that clinical trials often fail to capture the full reality of living with an autoimmune disease. For example, exclusion criteria frequently leave out patients with coexisting conditions or more complex medical histories: patients like us. Additionally, outcome measures (like tracking stool frequency or CRP levels) don’t always reflect whether we’re actually feeling better in our daily lives. These considerations (and more) make one thing clear: our lived experiences aren’t just anecdotes—they’re critical data that researchers need to hear.

Research could be wrong about what matters unless we speak up.

Through opportunities like participating in focus groups, helping design patient surveys, and contributing feedback on study proposals, we are able to use our own stories as tools for change. It highlights blind spots in research design and helps redirect studies toward questions that actually matter to patients. For example, while a researcher might focus on mucosal healing as the ultimate goal, many patients care just as much about reducing fatigue, improving school attendance, and preventing weight loss.

The PCORI Model: Listening by Design

The work we do through Young Patients’ Area aligns closely with PCORI’s mission. Founded in 2010, PCORI is a nonprofit research funder created to ensure that patients and caregivers have a central voice in shaping health research. They prioritize comparative effectiveness research, or studies that compare different treatments to see what works best for real people in real-world settings.

One of PCORI’s guiding principles is engagement: bringing patients, caregivers, and clinicians into the research process from the very beginning. This includes setting priorities, selecting outcomes, and even helping interpret and disseminate findings.

Our job isn’t just to talk about symptoms—it’s to reframe what success looks like. For me, success might be attending college classes without fear of a flare. For another patient, it might be gaining the confidence to disclose their condition to peers or employers.

Why This Matters for the Future of Research

The future of research must move beyond lab values and into lived values. That means acknowledging that a good lab result isn’t always a good day. That means tracking not just disease activity but life activity. That means involving patients not as tokens but as co-designers of the systems meant to treat them.

And stories like mine are essential to this shift. They put a face to the numbers, a context to the clinical trials, and a purpose behind the protocols. They remind researchers that behind every data point is a person with hopes, routines, and plans that chronic illness interrupts.

Call to Action: Let Us In

If there’s one message I hope readers take away, it’s this: patients—especially young patients—are ready to be partners in research. We have insights you can’t find in textbooks and observations you won’t hear in brief clinic visits. But we need to be invited in, heard fully, and trusted deeply.

Organizations like Young Patients’ AREA are leading this movement, but we can’t do it alone. Whether you’re a clinician, researcher, nonprofit leader, or fellow patient, consider how your work could be transformed by listening better. Read our stories. Include our feedback. Let our lived experiences shape the next generation of solutions.

Because at the end of the day, research should be about improving lives. And no one understands what that takes better than the people living those lives every day.

Suggested Reading

Forsythe, L., et al. (2019). Patient engagement in research: Early findings from the Patient-Centered Outcomes Research Institute. Health Affairs, 38(3), 359–367. https://doi.org/10.1377/hlthaff.2018.0 5067

Patient-Centered Outcomes Research Institute. (2024, February 26). The value of engagement in research. https://www.pcori.org/engagement-research/value-engagement-research

Rewriting My Chronic Illness Story: From Diagnosis to Doctorate (And Beyond!)

I was diagnosed with rheumatoid arthritis at 19 years old. I was a former athlete who stopped after high school when a “mysterious injury” in my hips made it too painful to swim or cross train.

[Spoiler alert: it wasn’t an injury, it was chronic illness.]

While looking for resources about my new disease, I stumbled across an arthritis-specific magazine filled with inspirational stories of others who were like me. I was eager to hear how people got through everyday life with arthritis – only, the more I read, the less I felt I could relate to these people. The magazine featured people with arthritis who ran multiple marathons, climbed the highest peaks of the world, and accomplished extraordinary feats of physical fitness. They were characterized as “stronger than their disease” and people who “could overcome anything.” Yet here I was, applying for a disability pass to help me as I struggled to walk across campus to class.

I felt weak, alone, incapable, and ashamed. I tried to live up to my former expectations. I tried to push through the pain and my physical limitations to keep doing what I always had before. I didn’t want to take meds, I didn’t want to eat right, and I didn’t want to go to appointments. I was only 19! I wanted to eat pepperoni calzones and Ben & Jerry’s with my friends at 2 AM after a night of partying. If I wanted to swim again, or even do a triathlon, I felt my young body should comply. I was flailing as I tried to hold on to my identity, but at the same time, I didn’t feel like I knew who I was anymore.

Finding Research

From 2013-2018, I had the privilege to pursue a PhD in Occupational Science. For my dissertation, I set out to explore what it looks like to live with an autoimmune disease as a young adult. I read books where researchers did interviews with all sorts of people with all sorts of chronic illnesses. What I found is that:

Researchers made theories about how people’s conception of time changes: sometimes illness feels like it interrupts our life plans, and other times it feels like a positive life-changing experience (Charmaz, 1991).
Researchers made theories about different kinds of “work” we do – work to manage illness, work to just get through the day, and work to find and maintain our identity (Corbin & Strauss, 1985).
Researchers found that the process of accepting chronic illness (my rheumatoid arthritis) is both intertwined with and goes beyond the stages of grief (Telford et al, 2006).

These articles and books helped me to feel both seen and hopeful that someone out there was truly trying to understand what I was going through. I felt validated that living with a chronic illness is NOT unidirectional, but rather messy; and it’s okay to fall, get back up, and fall again. This research saw me beyond medication, beyond a number, and beyond inspiration porn (using my disability to make non-disabled people feel good) for fundraising – it acknowledged that patients are also young people trying to figure out what to do next.

I’ll be honest: I am still quite stubborn. I still try to push through the pain and my physical limitations, I still struggle to take my meds perfectly, I still don’t eat right, and I still avoid the doctor’s office.

The difference is that now I have a support system that encourages me to practice self-care and make healthful decisions for both my physical and mental wellbeing.

I have built a physical environment and flexible routine that allows me to have good days and bad days. I have learned the signs of when I stray too far from my self-management regimen, and how to get back on track without panicking. I am open with my doctor about how I am feeling, including when I am feeling rebellious toward the things I know I need to do to manage my arthritis. And as a researcher, I advocate for patients to have a say in their healthcare decisions and health research, as we are the only ones who know what everyday activities and thoughts look like with our disease.

I also have a newfound appreciation for those who share their stories about living with chronic illness – whether they climbed Mt. Denali, won Olympic gold medals, figured out how to get insurance to cover their medication, or started the 10th grade. Every experience has meaning, and every story can help improve healthcare and community support for the young people who come after us.

I am fulfilled being a graduate, a researcher, a mother, a spouse, a crocheter, a mentor, a patient advocate, and so many more identities that I didn’t know I would get to take on. And I am grateful to be writing a blog about what I’ve overcome.

It’s a healing process to share and be heard, as well as to hear others. And when we use our stories for advocacy specifically, we can workshop with peers and collaborate on how to get the purpose and message of our stories across to others. I am so excited and proud to be Co-Lead of YP AREA, where I can use my skills to lift up every young patient who has a story to tell.

A dark blue image with teeth outlines in the background in green. In the middle of the image is a giant cartoon tooth with dentists studying it.

How Autoimmune Conditions Affect Dental Health

When I was first diagnosed with psoriatic arthritis, I put all of my focus on my disease. I sought information about my condition nonstop, tried everything to feel better, and attended doctor appointments frequently. With my disease at the forefront of my mind, I neglected my dental health. Like most preteens, I had braces in middle school. My family paid thousands of dollars so I could have straight, white, shiny teeth. Unlike most kids who get braces, I cared for my teeth, brushing twice daily and flossing between my brackets. I never had a cavity in any of my adult teeth because I respected my parents’ hard work, so when I sat in a new dental office after moving and not going to a 6-month cleaning, I was told I had ten cavities. I cried in shock and fear. I was disgusted with myself. How could I go from having a clean mouth to having so many cavities?

My dentist did not bother to talk to me about potential reasons for this. Although it had been a while since I went to the dentist, I still cared for my teeth like always. My dentist shrugged and told me it must be due to sugary drinks. I tried to protest his accusations, but telling him I didn’t drink soda while he was drilling into my teeth was difficult. They filled and drilled my problem teeth, and I left with my wallet emptier and my self-esteem lower. After my impersonal visit to the dentist, I switched to a different dentist. If you do not like a health provider, you can shop around. You deserve to be treated respectfully, and I knew I needed to change providers.

My new dentist was Dr. Andrea Wallace at Wallace Family Dentistry. My consultation with Dr. Wallace comforted me in ways I couldn’t imagine. I was overjoyed that I put myself first and found a new provider. Wallace examined my previous X-rays and confirmed I had more cavities since my recent fillings. I felt like breaking down, but I got the courage to ask her why this was happening to me. We discussed my overall health issues, and she informed me that new research found a link between autoimmune diseases and decay. She told me that my teeth were clear with little to no plaque, making my cavities a mystery rather than my fault. She also gave me some new dental hygiene products with nano-silver. I scheduled my next filling appointment with faith that I was in the right hands.

Curiosity got the best of me, and I began reading research articles about my condition. While there are few resources, a few points are widely understood. The two problems have a definite link and are not a one-way street. Autoimmune diseases may cause dental issues, and dental problems can create autoinflammatory responses. The most known link is how autoimmune diseases or medications patients take cause dry mouth. Saliva covers and remineralizes teeth, so the teeth can break down when there is not enough saliva in the mouth. It is hard to keep up with dry mouth with lounges, sprays, and other products because they are not accessible most of the time. My job requires me to talk constantly, and while I drink water throughout the day, it isn’t enough to combat the dryness from my medication, methotrexate. Some researchers believe that people with specific conditions have more acidic saliva, causing quicker decay, too. Collagen is another factor to consider. Various connective tissue diseases such as lupus, rheumatoid arthritis, and scleroderma cause inflammation in collagen. Collagen is essential because it makes up the fibers in teeth and bones.

In addition to the previous research, a breakthrough study revealed a link between autoimmune diseases and a tooth enamel defect. The study found “that most patients with APS-1 and celiac disease develop autoantibodies, especially of the IgA isotype, against proteins specific to ameloblasts. As a consequence, the body’s tolerance to these proteins is disturbed, leading to impaired enamel formation.” (Breakthrough Study Reveals Link between Autoimmune Disorders and Tooth Enamel Defects – Institute of Molecular Genetics of the Czech Academy of Sciences) APS-1 refers to the autoimmune polyglandular syndrome. My enamel has been fading, causing noticeable white spots on my teeth. This discovery could lead to the answer I have been seeking, but only time will tell as researchers continue to study this phenomenon with other patients and autoimmune diseases.

Even though I know that every dental visit will result in more cavities, I am now more educated about my situation. Cavities can be produced for other reasons than poor hygiene, and while I will continue to brush and floss daily, I refuse to obsess over my teeth’s flaws because it has simply been proven to be not my fault. I hope that in the future, more research will be conducted to help patients like me with their dental health because although insurance doesn’t consider it a part of your overall health, dental health is critical.

References:
Breakthrough Study Reveals Link between Autoimmune Disorders and Tooth Enamel Defects – Institute of Molecular Genetics of the Czech Academy of Sciences.

Category: Research