A Name Change That Doesn’t Help

At about age two I was diagnosed with juvenile rheumatoid arthritis (JRA). Months before I started getting sick with a swollen and painful left knee. As the symptoms worsened and spread to other joints, my parents took me from doctor to doctor to find answers.

Finally, they found a physician who took my illness seriously. He immediately admitted me for a battery of tests that resulted in my diagnosis. While I don’t remember the experience, my mom always quotes him saying “this is a very sick little girl” the instant he saw me. Somehow he saw through my cheerful disposition to see my pain and recognize that I needed help.

Throughout my years I’ve continued to be an anomaly to my physicians because of the severity of my disease and the (stubborn) persistence I have in living within. Although I don’t see any other way to continue my life, they are often surprised by all that I can do despite my deformities and disabilities.

When did this name change happen?

I don’t know when, but somewhere along the way the name for JRA changed to juvenile idiopathic arthritis (JIA). When I was a child the doctors explained that JRA meant I had juvenile (child-age) onset of rheumatoid arthritis. The new name of JIA confuses me because it removes the ‘rheumatoid’—to me the most important distinction of my illness! Idiopathic means a disease for which there is no known origin. This word doesn’t describe anything new. Instead, by removing rheumatoid it makes it more confusing because it declines to distinguish the type of arthritis, that it is an autoimmune disease.

Obviously, I was not privy to the debates or reasons behind the name change, but as a patient I find it less than helpful. In my mind and heart I will always identify as having JRA because my disease is rheumatoid arthritis with a pre-adult onset. To me, JIA sounds like “mystery arthritis” and doesn’t fully describe the aggressive nature and the damage that child onset of autoimmune diseases can wreak on a body.

Additionally, all RA can be considered idiopathic. No one knows what causes RA in any person. So why the need to delineate this in the childhood name? It seems to be a distinction that reduces understanding of the illness, rather than enhancing it.

I’ll admit that I often think I have “super” RA. But I think that a lot of my experience can be explained by the early childhood onset. Not only do I have a very aggressive form of the disease (that continues to still actively attack my joints nearly 40 years later!), but it started so young that it affected my growth significantly. My body was attacked while my bones were growing and so I was literally formed by my illness, not just from a deformity perspective but also by my physical development. For example: my hands, feet, and shoulders are all smaller than normal.

The name change concerns me.

Recently, I have become more concerned about the name change from JRA to JIA because I worry that some medical professionals do not understand or believe this is a real disease with differences from the adult-onset version. My experience of long-term active disease since youth means I have sustained significant physical damage—it is not a case of regular RA. Not to diminish the effects of adult-onset—just that I’ve had the disease an awful long time, it was extremely aggressive, and there is evidence it acts a little differently in the body. Somebody with RA can have symptoms as bad as mine, but my disease will always be a little different.

It’s important for JRA to be understood as similar, yet possibly different because it affects treatment, monitoring the disease, maintaining long term health, and so much more. Both children and adults with JRA need that understanding to receive the best care.

A rheumatologist whom I had never met (he just had read some records about me) recently concluded that juvenile onset was basically no big deal. He doesn’t believe JIA and RA are different and thus didn’t require any differences in approach. Not only was this personally offensive, it was clinically wrong—he FDA has separate approval of drugs for JIA from RA. No fairy godmother tapped me with a wand when I turned 18 and turned my disease into regular RA. The amount of damage and deformities I live with, plus level of active disease, is significantly severe and requires a higher level of care. I have lost so much that preserving my health is imperative. This is why a name change matters and also why clinicians shouldn’t be sloppy about giving ill-informed opinions.

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