Every April, there’s one day that I always look forward to — Patriot’s Day. It’s a state holiday in Massachusetts when the Boston Marathon is run. Since I was a young girl raised outside of Boston, marathon runners were my earliest heroes. I lived to run, and I loved to have my dad clock my fastest times down the dirt access road near our house.
Running the Boston Marathon would have been a dream come true, but at age 8, I began experiencing unusual symptoms like joint pain, high fevers, blotchy red rashes, and excessive bruising. After fainting at school when I was 11 years old and being rushed to the hospital, I was diagnosed with systemic juvenile idiopathic arthritis (SJIA) a few days before Christmas in 1994.
The first pediatric rheumatologist I saw told my mom that I should begin using a wheelchair. That scared my parents so much they found a new pediatric rheumatologist who treated me well into adulthood.
During my high school years, I underwent a number of surgeries, including bilateral hip replacements at age 14 and arthroscopic surgery on my left knee the next year. My right knee was operated on to remove the synovial membrane of the joint the following year.
During my teens, I got involved with the Arthritis Foundation. My mom thought it would be good for me to meet other kids with arthritis. It helped to have others to relate to, but I still struggled to navigate my identity outside of being sick.
More hip surgeries plagued me during college, where I tried to keep my arthritis a secret from everyone. I would hide my weekly injections of Enbrel and other medications. Then, during my sophomore year, my hip replacement needed to be repaired so I was back on crutches, forcing me to tell my friends about my arthritis.
A few years ago, I decided I was ready to reclaim my identity as an athlete and started running again. It wasn’t long before I crossed the finish line of my first Spartan Race, and since then, I’ve gone on to run in more than 15 local races.
Around this same time, I also got involved with the Arthritis Foundation again. I organized a fundraising team of family and friends for the Walk to Cure Arthritis. My friend Rob used to call me “Hips,” so when it came time to name my team, the obvious choice was “Team Hips.” I set my sights on a fundraising goal of $1,000 and sent out a personal e-mail to friends and family. Three months later, I accepted the top fundraising family team award after Team Hips raised $6,310. Our team has gone on to raise more than $50,000 over the last five years — something I’m incredibly proud of.
During this time, a friend suggested that I attend the Arthritis Foundation’s advocacy summit, where I learned how to tell my story, engage elected officials, and get more involved with the patient advocacy community. It was a very emotional experience for me because it helped me realize what I was meant to do with my life. I left the summit feeling a greater responsibility to share my story more publicly, which led me to start my blog. I write about everything from my treatment and surgeries, training routines, and the goofy antics of my chocolate Labrador, Penny.
After my third knee surgery last year, I decided to cut back on running to hopefully slow down the joint damage and hold off on a knee replacement for as long as possible. While I’ve cut back my running, I’ve focused on lower-impact exercise like cycling and swimming, and this year, I’d like to complete my first cycling race.
I’m honored to be named the Walk to Cure Arthritis National Adult Honoree this year. My goal is to help find a cure for this devastating disease so that other kids diagnosed with arthritis have a better future ahead of them.
Read more about juvenile arthritis.