The first blog post of this year told how I’ve come to prefer the term Rheumatoid Disease to Rheumatoid Arthritis. The response? Within 2 days in Facebook-land, there were 294 Shares, 583 Likes, and 128 comments. There are now 1,000 Likes, 500 re-Tweets, and 80 blog comments. That’s people voting with their mouse: Yes.
But as I said back in January, there will be much more to come on this topic. Today, let’s look at 5 reasons that saying Rheumatoid Disease is better.
5 events show calling it Rheumatoid Disease could help
1) As researchers recently explain, Rheumatoid is a systemic disease, present outside of joints, and prior to articular abnormalities: “Rheumatoid arthritis (RA) is recognized to be an autoimmune disease that causes preclinical systemic abnormalities and eventually leads to synovial inflammation and destruction of the joint architecture.” So much for those saying “There is no RA before visible synovitis / joint swelling is diagnosable.”
2) Patients – and doctors – themselves are confused by the name. The blog has seen hundreds of these examples, but here are two from this week:
- An ENT specialist reacted to an RA patient complaining of vocal cord inflammation. “He looked at me like I was an idiot and said ‘But there are no joints in the voice box.’” (In case you didn’t know, one, that doesn’t matter since RA affects more than joints and, two, yes there are. Joints in the voice box that is.
- Another RA patient visited the eye doctor “after I came down with a bad case of Iritis and Epislceritis. When I asked my ophthalmologist what it was, he said ‘You have arthritis in your eye.’” This doctor knew the disease could affect eyes, but didn’t have a term to explain it. Saying “arthritis” in the eye is not logical since “arth” means joint” and there are no joints in the eyes. No, really. This time, there aren’t.
3) Non-articular symptoms of Rheumatoid would be more likely to be treated if the term were updated. We constantly see this struggle. The opinion of an expert: “Perhaps rheumatologists should consider revising the approach adopted in the routine assessment of RA patients by using an annual review form to include the systemic aspects of the disease in addition to its articular manifestations. This could be roughly analogous to the approach taken by diabetologists for decades, which has helped to reduce mortality through regularly recording of predictors such as blood lipid profiles, blood pressure, hepatic and renal function, together with a global measurement of disease activity.”
4) Researchers still don’t know enough about Rheumatoid disease to say why or how it attacks the body. Their work is better served with more accurate terms: “‘We call it rheumatoid arthritis, but we should really call it rheumatoid disease,’ notes Elinor Mody, MD, director of the Brigham and Women’s Hospital Women’s Orthopedic and Joint Disease Center in Boston. Rheumatoid arthritis can damage the whole body. Besides the joints, the ‘heart and lungs are the most commonly affected,’ says Dr. Mody. Doctors aren’t sure how or why rheumatoid arthritis causes other organs to suffer. ‘We don’t know the whole story,’ Mody says.”
5) Lives will be saved. Just last week, two more patients posted that their doctors dismissed symptoms, judging their disease according to their hands, even calling RA a hand disease. I’ve seen this firsthand as well as hearing from many patients that this common misconception lives on even in some doctors. Changing the name will correct this misconception and call attention to the need to treat the whole disease. In spite of common confusion that RA activity is concentrated in the hands, there are several dangerous aspects of RA that are more common than once recognized such as spinal damage, heart disease, or lung disease.
Bonus: Click here for a printable list of 10 reasons RA ought to be changed to “Rheumatoid Disease.”
- Don’t miss our brand new magazine page! Whether you missed a post or you are looking for a favorite one, you can find every post on one page – click here. Or click SeeAll on the menu.
- Click here to read Kelly’s new article in The Rheumatologist (the print magazine for rheumatologists) discussing the patient’s role in healthcare.
- In a new radio interview with Dr. David Borenstein, former president of the ACR, Kelly discusses ways to make life better for people living with Rheumatoid disease – click here to listen.
- Preclinical Rheumatoid Disease: There Are No Joints in the Lungs
- We Refuse to Be Mislabeled: Updating Rheumatoid Arthritis (RA) to Rheumatoid Autoimmune Disease (RAD)
- Rheumatoid Arthritis Complications
- Articles about Rheumatoid Arthritis and the spine