Daniel Malito

By Daniel Malito, 37, Garden City, N.Y.; diagnosed at age 9 with systemic-onset JRA and writer and author of So Young

Juvenile Rheumatoid Arthritis. JRA. This is the name they gave the disease I was stricken with at the tender age of 9. Back then, doctors were only just beginning to understand the ailment and its symptoms. No one was sure what was going on inside my body, so I became a guinea pig – a receptacle for any treatments thought at the time to be effective. Gold injections, high aspirin dosages, chemotherapy and copious amounts of steroids were all tried. In fact, I have been given almost every single medication and treatment ever available for rheumatoid arthritis, and there is no doubt that these false remedies did more damage than good.

Right now, I have four artificial joints inside me: Two hips, a shoulder and an ankle have been violently removed and replaced with bolted-on metal facsimiles, and I still have three more joints left to go. In addition to the joint procedures, I’ve also had bones shaved and faults corrected; I’ve suffered a heart attack after surgery and have been given three stents; and I currently enjoy the safety of an implanted defibrillator that waits to kick my heart in it’s proverbial butt if it gets out of line. As of now, I’ve gone under the knife so many times that I’ve earned a free travel mug. That’s the picture of RA for those of us who were diagnosed in the early days.

Juvenile Idiopathic Arthritis. This is what my disease would be called if I were diagnosed today. The change in name is minor, yes, but it represents a quantum shift in the way that rheumatoid arthritis and, in fact, autoimmune disease in general, is treated today. As controversial as this statement sounds, I’d give my right arm to be a child of JIA instead of the experiment of the JRA dark ages that I was.

Children who have juvenile idiopathic arthritis enjoy a plethora of treatments that weren’t available in my day. The most important of which is the class of drugs called “biologics.” These medications alter the body’s chemistry and attack the cause of the disease, rather than treat the symptoms. It’s a Godsend for anyone with autoimmune form of arthritis, and I am grateful each and every day that today’s afflicted youth will never have to undergo something as barbaric as a joint replacement. In fact, some doctors have told me that they believe replacement due to RA might be looked upon like using leeches to relieve patients of “bad humors,” in just a few short years. This is a fantastic turn of events.  

In addition to the new slew of treatments available, the sheer amount of knowledge about autoimmune disease overall has increased tenfold since I was told, “You could have Lyme’s disease, or maybe bone cancer, but also it could be Kawaski’s, or possibly scoliosis. We aren’t really sure what you have, to be honest, so we’re going to treat you for everything.” And they did, destroying my body in the process.  

Fortunately, I’m able to take solace in the fact that my sacrifice allows the children of today to never experience the horrors my family and I were forced to endure. Seeing young children with arthritis walk around symptom-free is my reward, and it’s as sweet as candy.