In 1982, I was diagnosed with juvenile rheumatoid arthritis at the age of two. At the time, most people were not aware that children could get arthritis—in fact, the same holds true today!
When I was younger, I was treated with baby aspirin for a while since doctors were unsure how medications used on adults would affect children. Unfortunately, this did not really control the disease and it took quite a toll on my entire body. As time went by, the arthritis did more damage to my body, causing many joint contractures and deformities. While I was in elementary school, I began using a walker and a wheelchair to get around. To this day, I have joint inflammation and live in pain every day of my life.
Arthritis can also lead to a number of secondary conditions, which for me has ranged from anemia to hyperthyroidism. Back in 2012, some of the medications I took as I got older caused me to have a serious GI bleeding. I nearly died and was in ICU at two different hospitals where I received 10 blood transfusions and had the bleeding cauterized. After receiving more medication to stabilize the bleeding, I was finally able to go home.
About a year later, I began to feel numbness in my fingers and toes. I mentioned this to my physical therapist, and we worked to try and address the problem. Eventually, the numbness went away for a few months but came back and got progressively worse. After seeing a series of doctors, I learned that the arthritis had destroyed some of the vertebrae in my spine and they were crushing my spinal cord. I had a 70 percent chance of becoming paralyzed if I did not have a spine fusion. I went to see surgeons at two well-known hospitals in New York City and Philadelphia who said I would need two surgeries to correct the problem. I was both devastated and terrified to hear that news, especially because I was newly engaged and looking forward to planning my wedding.
After talking with a friend, who was paralyzed by the same condition, he said Rothman Orthopaedic Institute provides cutting-edge musculoskeletal care, and insisted I go there to get another opinion. I researched Rothman Orthopaedics and saw that Dr. Alex Vaccaro is renowned for his work. Since he treats many of the local professional players, I figured it was worth making an appointment, especially if the athletes trusted him with their care.
At my appointment, Dr. Vaccaro thought I only needed one surgery to do the fusion—and he was right. Because the surgery was risky, I decided to postpone the surgery until after I got married in 2014. As my friend predicted, Dr. Vaccaro did an amazing job and I owe him my life.
Since my surgery, I have continued to make the most of my life by volunteering for various organizations and advocating for people with disabilities. I work in the field of emergency management, where I spend a lot of time developing inclusive planning and helping people with disabilities prepare for emergency situations. Although I am not a physician, I hope I can help to save lives through my work.
I also serve as the second Vice President of the Arthritis National Research Foundation’s Board of Directors and help raise funds to find a cure for arthritis. I also had the chance to help raise awareness when I modeled in the Tumbler and Tipsy fashion show during New York Fashion Week in 2019. It is my hope that better treatments and ultimately a cure will be found so others do not have to experience what I have been through. Until then, it is comforting to know that those in need of critical medical care, like myself, can turn to Dr. Vaccaro and know they will be in excellent hands.