After weeks of contemplating a 2019 awareness campaign theme, it came to me one morning while lying stiff in bed: Call it what it is.
In 2011, I helped found the Rheumatoid Patient Foundation (RPF), a nonprofit working to improve the lives of people with rheumatoid disease (RD). For a decade, I’ve served that community as an advocate, writer and speaker. And for 13 long years, I’ve lived with an aggressive persistent form of the disease — many mornings in bed.
This disease is commonly called rheumatoid arthritis, but many medical articles use the historical term rheumatoid disease. Years of studying medical journals and listening to people who live with the disease persuaded me that the term “disease” is much more accurate. Calling the disease by one of its symptoms — arthritis — is akin to calling a car a wheel. The part is not the whole of a thing, even it if it is the most identifiable part.
Investigators are beginning to understand more about how RD begins, and much of that research points to the lungs as a site of initiation of autoimmunity and inflammatory activity. Since clinical diagnosis of arthritis necessitates multiple joints be persistently swollen, researchers use the term “preclinical” to describe early disease. Other recent research has been directed at the continuing mortality gap of RD, mostly a result of its effects on the lungs heart, and vascular system.
RD is a progressive inflammatory disease that damages joint and organ tissues and results in multiple health problems, frequent disability and increased mortality. Patients often call it an “invisible illness” because it’s not always apparent, especially during the early years. This makes early diagnosis challenging.
Research demonstrates early diagnosis is essential to successful disease treatment and improved outcomes. The key is acknowledgement that the disease exists beyond swollen fingers (arthritis). Specific antibodies, or biomarkers, are often present during that preclinical period before arthritis is obvious or persistent.
In a significant innovation for patients, a new at-home RA test checks for three of those biomarkers. RPF has recently partnered with imaware, makers of the test, to help more people be diagnosed with the disease earlier, during the “window of opportunity” for response to treatment. If we call it what it is, we will think of it as a disease and test earlier so that we can treat more effectively.
Kelly O’Neill Young, President, Rheumatoid Patient Foundation, [email protected]