Why We Walk: SJIA Research & Supporting the Arthritis Foundation
Written by Ronny Bachrach
My daughter has a rare disease called Systemic Juvenile Idiopathic Arthritis (SJIA). The name itself is a hot button topic within the field because not all kids that have SJIA suffer from arthritis of the joints. To complicate things further, when the disease is diagnosed as an adult, it is called Adult Onset Still Disease. In fact, there are some leading rheumatologists that would like the name changed in order for the pediatric diagnosis to align with the name of the adult diagnosis. But, changing a disease name has more implications than one might originally consider.
Many of the challenges have to do with how the disease is coded within hospital medical record systems and how relevant medications are prescribed for those particular diseases. Compounding the issue further is how the medications are approved by the FDA; which diseases are the medications approved to treat and how does changing the name of the disease complicate access to them?
Regardless of the messy state of the name and desired changes, SJIA is considered a form of systemic arthritis, which means systemic inflammation. SJIA and other forms of arthritis share similar features and have an array of overlapping medications that can be used.
While SJIA may be the round peg to the “arthritis” square hole, they are still inexorably tied to each other. And because of that, my family and I make a considerable effort to raise awareness for the Arthritis Foundation and their efforts to uncover treatments for all types of arthritis.
While our research goals may not be 100% aligned, the foundation is large enough to allocate resources to all types of arthritis, SJIA included. Additionally, advancements and progress for treatments for other types of arthritis can also have a trickle down effect and indirectly benefits SJIA patients.
So, we walk to raise awareness for arthritis, but even more so to help put our rare disease on the map. We walk to raise funds for SJIA, but also to help fund other diseases that could hopefully offer some insight and help in treating SJIA as well.
We also walk and fundraise as a means of helping build a sense of community for our daughter to be a part of. As a parent of a chronically ill child, we often feel desperate to work toward changing things for the better. Participating in a walk or event to help spread awareness and fundraise is an approachable way for families to feel like they can be a part of the search for answers.
If you or someone you know needs help navigating SJIA, or any type of arthritis at any age, contact our team today.