My official diagnosis in 2012 confirmed my suspicions that I had rheumatoid arthritis.
For two years prior to that appointment, I bounced from one specialist to the next with each one treating a different symptom. When I finally met my rheumatologist and was diagnosed with two chronic conditions, rheumatoid arthritis and celiac disease, I felt a sense of relief and validation that all of my symptoms were connected. My mind was flooded with questions and some of the answers were as hard to swallow as the eleven pills I was prescribed to take each day. I recall asking my doctor to clarify what he meant when he said my treatment plan would involve some trial and error as we sought the best combination of medicines and diet to slow progression of my disease and improve my symptoms.
This condition is forever? This treatment plan is trial and error?
During my childhood, I was frequently sick with bronchitis and strep throat. I knew the routine and even now I can almost taste that white pasty liquid that my parents tried to hide in my applesauce so I would take all of my medicine. As torturous as it felt at the time, the medicine cured me of whatever respiratory ailment I had. I knew if I took it, I’d feel better. This RA diagnosis was different. I take multiple types of medicine, including pills, injections, and infusions to better control my overactive immune system, and yet I will never be completely cured with the medicines currently available.
The more familiar I became with sorting through research I found online, the more specific my questions became.
I found myself getting frustrated with questions that had simply not been the focus of any research. As I kept adding new topics to my endless list of questions, I came across CreakyJoints and instantly felt that I’d found a home.
When CreakyJoints partnered with academic researchers to develop ArthritisPower—the patient-powered research network for RA and other related conditions—it appealed to me because it was a network of patients like me with whom I could seek illumination to many of my unanswered questions. I applied to and was selected to be a member of the Patient Governor Group; it’s a patient steering committee that guides the work of the ArthritisPower research registry. We Patient Governors are directly tied to the research by developing research questions and talking with doctors, academic researchers or professors, and other patients.
In ArthritisPower, patients are the center of the research. We customize features of ArthritisPower so that it works for us.
In my field of work many times I have been asked to provide input after the product was created so someone could check a box that the product had been reviewed by users. With ArthritisPower, however, my input has already impacted the function of the smartphone app.
A chronic condition often means a lifelong process of finding what works best.
I know that being an active part of patient-centered research is beneficial to me, but also to other patients and the broader research community. If you are wondering how to get involved yourself, consider learning more about ArthritisPower. If you are already enrolled, signing up is just the beginning. Personally, I get more out of ArthritisPower by filling out my complete medication information and doing my symptom tracking at least once a month. More and more special studies seem to be coming our way, so keeping information up to date helps ensure we won’t miss an opportunity to participate!
Shelley was diagnosed with rheumatoid arthritis and celiac disease at the age of 42. She has found the most success with her current biologic along with a combination of medicines, diet, and exercise.
Created by CreakyJoints in collaboration with the University of Alabama at Birmingham, and supported by a multi-year, multi-million dollar investment by the Patient-Centered Outcomes Research Institute (PCORI), ArthritisPower is the first ever patient-led, patient-centered research registry for joint bone, and inflammatory skin conditions. The free ArthritisPower mobile and desktop application allows patients to track and share their symptoms and treatments while simultaneously participating in research via informed consent.