Fighting for change - RA Warriors Unite!

Kelly at RAwarrior.com has written this thought provoking (and honest!) article called 5 Reasons Rheumatoid Disease Is a Better Term Than Rheumatoid Arthritis.  Everything that is italicised in this post is directly from her article.
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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.”

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.

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.”

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.”

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."

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I am in favour of this for many reasons.  Firstly, when I'm not being a patient I'm a clinical pharmacist who gets to be on the other side of the healthcare partnership here in Australia.  It frustrates me no end that there are far too many health professionals who simply don't understand that RA is not just a joint disease, but in fact a systemic disease that manifests in the joints (amongst other things).  

Secondly, I have many extra-articular issues with my RA.  Some that I struggle with daily, others that really only worry me when I have a flare.  But ultimately, it's only because I am educated about RA and all its intricacies that I have had a lot of my out-of-joint symptoms taken seriously.  Don't even get me started on ocular symptoms...!

The better the awareness, the better the understanding; and the better the understanding, the better the treatment for those of us who are patients - and one of the best ways to improve understanding is to label this disease as something that more accurately reflects its actuality.  Kudos to Kelly, and all those fighting for change!