Shortly after our daughter Sophia’s JA diagnosis four years ago, a friend asked about her condition. “Are you sure she doesn’t have juvenile diabetes?” the woman questioned, convinced that we had not heard our daughter’s diagnosis correctly from her doctor. “Kids can’t get arthritis.”
Until Sophia was diagnosed with juvenile arthritis, we never knew that this disease existed either. It is not news to the JA community that our cause gets far less attention than many other causes that are less serious or affect fewer people.
It is our kids who suffer most from the lack of awareness. We’ve heard countless stories of children taunted by peers and pressured by teachers because rheumatic diseases are not always evident to the casual observer. Far too many JA kids manufacture a smile rather than try to yet again explain the chronic nature of their disease.
It is not an easy task to create awareness for a disease that is often invisible.
Not easy, but also not impossible. In 1970, a group of parents formed an organization to raise money and advocate exclusively for kids with diabetes, who make up a tiny percentage of the overall diabetes population. Today, the Juvenile Diabetes Research Foundation (now known as JDRF) raises approximately $200 million per year towards research for these kids— about the same amount raised by the American Diabetes Association, whose mission is to support all people with diabetes.
By comparison, private research funding for pediatric rheumatic diseases in the U.S. is about $2 million— 1% of what JDRF raises— and rheumatic diseases affect twice the number of kids. While it took JDRF over 40 years to reach this point, that was before the internet or social media. With the tools we have today, the JA community may be able to achieve similar results in less time.
But first we need to understand how juvenile diabetes became such a well-funded cause. JDRF did two key things: they defined juvenile diabetes as distinct from adult diabetes, and they brought their cause into the public consciousness. You never hear phrases like “kids also get diabetes,” because juvenile diabetes has been successfully branded as its own cause. Further, you see and hear the words juvenile diabetes everywhere—from magazines to parade floats, to the lips of celebrities.
We believe that if juvenile arthritis is going to get the funding that it deserves, it must be defined as separate and apart from the general term “arthritis.” Further, our community must break out of its bubble on a large scale and preach beyond our own choir.
On December 3rd, for the first time in history, the JA community will have a celebrity competing for our cause on national television before an audience of millions of people. While it will be a thrill for all of us to see our cause get this kind of attention, what makes this significant is that the millions of viewers are mostly outside the JA community.
The Chopped audience is going to learn a little bit about juvenile arthritis while they are sitting at home being entertained. The discussion of juvenile arthritis will likely be just a small portion of the episode, but by the end of the show, there will be millions of people who have now heard of our kids’ disease— and they are going to see juvenile arthritis as a cause that a major celebrity deems worth fighting for.
It’s a start.
Joel & Laura