I was diagnosed at 16 months old with polyarticular JRA and since then have gone through the ebbs and flows of disease activity -many medications, much time spent in physical and occupational therapy, and periods of relative remission. Once I reached young adulthood and had stopped growing, I was able to have several surgeries to correct foot and hand deformities. Today, RA affects most of my joints in one way or another, whether the joint is currently active, has residual deformities, or shows secondary effects from other affected parts of the body. But that sounds worse than it is. Im lucky in that I am for the most part fully functional with the small exceptions of activities like playing golf, running and wearing high heels- nothing that seriously affects my daily life. And I am thankful for the newer anti-TNF (tumor necrosis factor) drugs, which seem to work quite well for me.
Having JRA has greatly influenced who I am today. After spending my entire childhood in occupational and physical therapy, I decided to get my bachelors degree in occupational therapy. During my clinical fieldwork experiences, I became interested in health policy through advocating for my patients with their insurers. I was frustrated by the limitations on the frequency of therapy sessions and the denial of necessary therapy services. After graduating and obtaining my license to practice, I went to work for a national health care trade association that represents occupational therapists. I was thrilled to experience the world of federal lobbying and reimbursement and regulatory policy on a national level. From there, I decided to go to law school, focusing on health law. After graduating and becoming a member of the Maryland Bar, I have gone back to working in health policy, this time for the federal government.
I hope that through this blog I can facilitate discussions on topics that interest others who are either learning about RA for the first time, or people like me who are always looking for new and better ways to manage it within our daily lives.