Meet Cameron!
“I was the expert.”
The following is adapted and updated from Cameron’s mom’s (Angela) ignite talk at a PR-COIN Learning Session in 2018.
12 years ago, my family’s lives changed forever. Where were you 12 years ago? Take a few seconds and think back. Maybe you were in college or just finished med school. Maybe you were just starting your fellowship. What were your hopes and fears? Where did you expect to be today? 10 years ago today, Dr Esi Morgan was in an exam room with my family diagnosing 8 year old Cameron with juvenile arthritis.
A new beginning, whether it be getting a new diagnosis or graduating medical school, is full of many hopes and fears. Looking back, I must admit I couldn’t even fathom where our family would be today. Would Cameron have permanent joint damage? Would he be taking a drug that has not yet been released? Would he be able to graduate high school on time? At the time, the fear of what was to come was so overpowering. I remember telling myself that I don’t have time to worry about what will happen tomorrow. I must worry about what IS happening NOW!
I found that getting involved with online groups and my local Arthritis Foundation helped alleviate my fears and help me focus on my son, not his disease. JA was not Cameron. It was just something in his life that would lead us to a world we never imagined being part of. I never imagined becoming an advocate and going to congress, not just once, but 7 times! I had no idea what to do when I got there. Were they going to just pretend to listen to me and then blow me off? Thankfully, the Arthritis Foundation had a sort of “roadmap” if you will, laid out. I guess it would be like the algorithm you have in Treat to Target. Start here, if that doesn’t work then this is step two and so on. After that first visit, something happened to me. I was no longer terrified. I had found my voice. It felt as if I was finally doing something to improve Cameron’s future.
At a follow up visit with Dr Morgan after one of the advocacy trips, I was telling her about what we had done. From this conversation, I was invited to critique the shared decision-making cards. I looked at them in the office and later joined a call to discuss my thoughts and opinions. This was different from the advocacy meetings in DC. I was on the phone with doctors! I thought they were the experts, yet I was being told *I* was the expert. How’s this possible? Imagine my surprise upon being invited to a Learning Session! For the first few Learning Sessions, I was the only parent in the room. It was intimidating at first, but once I understood more of what PR-COIN is about, I realized I couldn’t do it all on my own. I needed my “tribe”. Look around the room today and you will see parents and patients from all over North America. Some have older kids getting ready to transition. Some may be newly diagnosed.
We have something special here with PR-COIN! The tireless effort and dedication to making better outcomes for MY CHILD and all the other children with JA is impressive. Imagine where we could be in 10 years when quality improvement and treat to target has become such “standard practice” that we couldn’t imagine NOT doing it? Parents often ask in the social groups online “Which rheumatology center is the best for my child?” or “Where should I take my child for a second opinion?” I want to be able to say ALL PR-COIN centers perform with excellence and 80% of kids treated at these centers have low disease activity! This can only be achieved if everyone in this room steps out of their comfort zone and becomes an advocate to those around them. If you don’t do it… who will?
In July 2018, Cameron was also diagnosed with Crohn's Disease. He is now almost 20 years old and has recently earned an Associates in Science degree with plans to further his education at the University of Kentucky in computer engineering. His arthritis has been quiet for several years. We are thankful to be involved with PR-COIN and feel the benefits of being treated at a PR-COIN center have contributed to his long term remission.
Visit our Get Involved page to learn more about how you can get involved in PR-COIN.