What a long strange trip it’s been.
Written by Daniel P. Malito on July 30, 2012
This past weekend, Allison and I attended the Arthritis Conference in St. Louis. The conference was a rousing success with over 1000 attendees, most of whom were families with children. At the conference, Allison and I gave a seminar on how to exist in a relationship when one of the partners is chronically ill. I’m not sure how well the seminar went off (the attendees were younger than we expected, so some of the material may have been a bit too mature), but we did manage to have some fun and get a few laughs from our audience. Now that we are back home, thinking about all the sessions held at the conference, I was proud to see how far we have come since I was diagnosed with J.R.A. back in 1986.
When I first got sick the doctors had no clue where to begin. Because of this, I was tested for everything under the sun from long bone cancer to influenza to Lyme disease. It took almost two years for the diagnosis of Juvenile Rheumatoid Arthritis to even be suggested, and another six months for the diagnosis to be confirmed. I use the term “confirmed” lightly as I have never tested positive for a rheumatoid factor, and have always presented atypically when it comes to symptoms. Be that as it may, those first two years were valuable days in which I could have been treated correctly. This would have increased the chance of avoiding the joint damage from which I suffer today.
Children today are diagnosed with arthritis within days or weeks, and treatment begins immediately. In addition there are now several different classifications of juvenile arthritis, and J.R.A. (Juvenile Rheumatoid Arthritis) does not even exist any longer as a diagnosis. Now, the illness is called Juvenile Idiopathic Arthritis (J.I.A.), or Juvenile Chronic Arthritis (J.C.A.), and it encompasses a number of illnesses, most of which are rheumatoid-factor negative. Interestingly, one thing that has not changed is that the diagnosis is still a diagnosis of exclusion, i.e., doctors eliminate everything else that could be wrong and by process of elimination end up on juvenile arthritis.
In 1988, there were very few drugs available for JRA. These treatments were almost all drugs that were classified as non-steroidal anti-inflammatory medicines (NSAIDs). NSAIDs are basically high-powered aspirin, and at one point I was even taking daily doses of aspirin. When these NSAIDs failed to keep my disease under control, I was moved up to the next level of treatment available at that time. Doctors assured us that this “high-powered” treatment would be the miracle cure we were looking for. The medicine was given by injection every few weeks, and it was called Gold. Not the metal that you wear on your finger, “gold salts” were more similar to the chemicals used for gold plating. Supposed to slow the inflammation and progression of the disease, this treatment did not work either, unfortunately, and only one treatment was left to me at the time – Prednisone. Any of you who follow my column know how much damage Prednisone has done to my body over the last 20 years. In fact, I will be going in for my fourth joint replacement on October 1.
Not only has the form of treatment of juvenile arthritis completely changed, but the method of treatment has changed also. Instead of slowly ramping up the power of the drugs administered and figuring out what works by trial and error, doctors now immediately begin with very powerful meds. This is done in order to knock the disease on its ass as soon as possible, for lack of a better phrase, which helps to limit the damage the disease does to the body. In addition, there is an entirely new class of drugs available now that was not even in the research and development stage when I first got sick. Disease modifiers, or bio-drugs, are biological agents that bond with different molecules in the body in order to block the receptors that arthritis uses to attack the patient’s own body. Ten years ago there was one or two of these disease modifiers available, now, by my off-the-cuff count, there are more than ten different types. Because children today have access to these miracles of modern science, there is a significantly reduced chance that newly diagnosed patients will ever have to go through the horror of multiple joint replacements like I have had to. Believe it or not, though, instead of feeling resentment, it truly warmed my heart to see young kids at the conference who were responding well to their bio-drug treatments. It means that the work that people like Allison and I are doing is not in vain, and that the auto-immune disease community is moving in the right direction as a whole.
While the above advances are truly impressive, all of this would not be possible without the exchange of information. When I was first diagnosed, the web did not exist, so there only road available for research was the local public library. I remember my mother going once a week to exchange one book about arthritis for another. When we exhausted the local library’s contingent of auto-immune themed-titles, we had to wait for the library to order a book from another library, which sometimes took weeks. This is a far cry from pulling up a Google search page and typing in “rheumatoid arthritis,” which as of now, results in about 17 million hits. I can only imagine what my mother would have been able to do with the Internet at her disposal.
In addition, my mother had to discover how to deal with the social issue of having a chronically ill child. How to interact with teachers, other parents, and doctors was all discovered via trial and error. Sometimes we interacted correctly, and sometimes we burned a bridge. I can remember my mother fighting with many a gym teacher while attempting to impart to them just how serious a disease my J.R.A. was. One gym teacher even told her “I think his [talking about me] problem is too much mother.” Neanderthal. Today, though, with conferences like the one we attended last weekend, these trial-and-error methods are a thing of the past. One of the seminars was even called “Teaching the teachers: Talking to your child’s school administrators about the disease.”
So, as you can see, we have come a very long way in just a short twenty years. It warmed my heart to see families there with multiple children who not only understood their brother or sister’s illness, but actually wanted to learn more about how to treat their sibling with compassion and care. Although arthritis is not a “sexy” disease with a big star behind it, it is sure nice to see that despite our handicap of not being popular, we are still moving forward. This is mainly due to the dedication of parents just like my mother who get up each and every day and make sure their child’s life is better than the day before. Thank you to everyone in our community who has helped this to come to pass, and keep up the great work!