Tell us a little about your background:
I was diagnosed with Still’s Disease in 2011…kind of. The digestible way of explaining my diagnosis is to say I have Still’s Disease — a rare autoinflammatory disease that affects the joints, organs, and other connective tissues. More accurately, however, after a few years of seemingly nonspecific symptoms, I was found to have a genetic mutation that indicates a rare periodic fever syndrome (also called an autoinflammatory disease) that my physicians indicate is similar to Still’s Disease and TNF-Receptor Associated Periodic Fever Syndrome, but cannot yet be further identified. The hope is that with time, further research, and a genetic alliance cataloging these mutations, one day my diagnosis will be confirmed.
I started writing about my experiences with a chronic illness on my blog, Chronic Curve, while in college. It explores my experiences in undergrad, science, and medical education, and chronicles my journey of pursuing a career as a physician assistant (PA) while living as a patient. In my free time, you can find me indulging a coffee addiction, watercolor painting, or hanging out with my dog.
What led you to advocacy?
When I was diagnosed, I quickly lost all of my physical independence and I was furious about it. I took to the internet hoping to find support, and when I couldn’t quite find what I was looking for — a community of young patients with my condition or other rheumatic diseases who were willing to talk about the ugly side of the experience — I started writing in hopes of building a community of my own. Over the last six years, what started as a personal project has turned into advocating for other young adults with chronic disease. I’ve learned that advocacy is not about sharing your personal story for yourself, but rather, sharing your story to create space for others to step up and do the same. At the heart of advocacy work is empathy, a touch of idealism, and the steadfast belief that people, working together, can create a paradigm shift in healthcare.
What do you do as an advocate? How do you do advocacy?
Much of my advocacy work involves writing and public speaking: sharing my experiences or the experiences of the patient community, what I’ve learned, what I would do differently, and offering the opportunity for engagement and discourse. Most recently, I’ve taken my advocacy experience to the clinical setting as a medical assistant in complex medical dermatology and wound care. Navigating life as both a PA in training and as a patient brings its own set of unique challenges. By speaking, writing, and sharing these experiences, I hope to be part of a greater movement to destigmatize the presence of chronically ill or disabled healthcare providers.
What is one thing you are most proud of as a result of your advocacy?
At a conference this past spring, I was chatting with a stranger over coffee about her experience with Parkinson’s disease. She spoke at length about how a blog had led her to consider out-of-the-box medical treatments and not give up on her dream of earning a degree in chemistry. You can imagine our mutual surprise when the blog in question was mine. It was a pivotal moment for me, to see how the words I had written and resources I had gathered were helping people in wildly different disease communities from my own. That stranger is now a dear friend (who is doing amazing work!), and I can never put into words the pride and gratitude I felt after our initial meeting — it let me know how far my advocacy efforts traveled.
What does patient engagement mean to you and why?
Patient engagement means, as a provider, considering the patient to be the captain of the team and an equal stakeholder. As a patient, it means taking on the responsibility of being the captain of the team. Within that definition, I would say it also means having the freedom to choose not to be involved in advocacy, support groups, or even as a primary decision maker on one’s healthcare team.
What about patient-centricity?
Patient-centricity at its core is about empathy and design: Does the model you’re working within work to serve patients in the best way it can? This concept extends far beyond the clinic and applies to everything from medical records to conferences to accessibility.
What does science mean to you?
I like to think that curiosity, persistence, and peer review are at the heart of science.
Who’s your favorite scientist and why?
Elizabeth Blackwell, who was the first woman to earn a medical degree in the United States in 1849. She is one of many incredible women who set a precedent for women in science and medicine.
What’s your favorite scientific discovery and why?
I was introduced to the concept of monoclonal antibodies during a molecular biology course in undergrad, when our professor delved into their application in cancer treatment development and how this particular discovery has opened the door to numerous immunotherapies for not just cancer, but for autoimmune and autoinflammatory conditions. The course and its content gave me incredible insights into the mechanisms through which my own medications worked to suppress my immune system.
What’s the connection from science to medicine for you?
In my opinion, there is not one without the other. To study science is to study the human condition. Clinical research allows us to further explore the hows and whys of the human condition in numerous facets, learn what works, what does not work, and further innovation.
What is the most important issue to you regarding the future of scientific research?
Accessibility, which goes hand in hand with science literacy. To recruit, encourage, and include diverse patient populations in research, it is critical that we as a society have a conversation about science literacy in the context of each patient population’s socioeconomic climate. It’s crucial that we take into account the socioeconomic and psychosocial factors that create barriers to participation in research, and the pitfalls of science education in general.
If you could initiate clinical research into one thing, what would it be and why?
I would love to see more longitudinal research explore how socioeconomic and psychosocial experiences impact disease activity in rare disease patient populations.
How would you feel about being able to join a clinical trial and participate in research from home?
The thing about treatments for rare diseases is that they are often in short supply. For some diseases, treatments are still in the pipeline and only accessible through clinical trials. I would absolutely consider a trial from my home. If the trial coordinator provided appropriate materials, explanations, and even training on how to navigate the experience, I would be on board. Without a liaison to walk me through the process (as would be the case in person with a clinical research coordinator), I would not consider it. Having that coordinator is crucial.
“So it goes.” It’s a quote from Slaughterhouse Five, a book that changed my perspective on time. It is a little something I repeat to myself when life doesn’t go as planned or according to a timeline. It serves as a reminder to just get on with it — whatever the day or moment brings.
This story has been edited for length and clarity.