Diagnosed at the age of two, Kelly Rouba has lived for twenty-eight years with juvenile arthritis (JA), an autoimmune disease that causes swelling, stiffness and joint inflammation. In all autoimmune diseases, the body’s white blood cells are unable to determine the difference between healthy cells and bacteria or viruses, so the immune system attacks normal healthy tissue. In the case of JA, this affects the joints.
Her parents were overwhelmed when she was diagnosed. Like many, they thought arthritis affected only the elderly. With minimal research, few specialists, and no public awareness for JA, finding treatment was difficult. The only prescribed therapy in 1982 was baby aspirin.
It is obvious from Kelly’s appearance that her case is severe. The disease stunted her growth, despite a year of daily growth hormone injections. Her mobility is significantly limited, and the hip abductor surgery she had as a child did little to improve her walking. She deals with chronic, debilitating pain.
Not until Kelly was in elementary school were promising drugs approved and available for children. Two medications that she relied on were Naproxen and Prednisone. In high school, she found relief from biologic drugs developed to reduce or prevent the auto-inflammatory process. During this time, Kelly made huge strides. With physical therapy, she was able to regain limb mobility, open doors, and even climb steps under seven inches.
After a few years, Kelly’s body became tolerant to the biologic drugs, causing her to regress and giving her significant pain. After more than a year of trying new medications, she recovered some progress, but her right knee has never improved. She most recently tried Synvisc therapy, which consists of injecting a naturally occurring joint “lubricant” into the knee, and may provide some anti-inflammatory properties. Her next option would be a full knee replacement, something she wants to avoid at all costs.
Kelly is the first to admit that accepting her condition took time. As a child, she was bitter and resentful. She did not want to associate with the disease in any way. She never spoke to her peers about her disability, and she avoided arthritis-related events and even other JA patients. She feared that the disease would define her.
The turning point came in college when she wrote a term paper on arthritis. Presenting it in front of her class was nerve-wracking, but she found speaking to be surprisingly liberating. The experience fueled her to become an advocate. No longer mad at the world, Kelly stopped pretending she did not have JA and started doing something about it.
A second life-changing moment came in 2006, when Kelly won the Ms. Wheelchair New Jersey title. With confidence and a larger platform, she was able to connect with more people in her disability community. She learns from the support of others and recognizes the strength and power of the bond between people persevering through the same challenges. This helps her move forward during difficult times.
For the past seven years, Kelly has been a force in the fight for arthritis research and awareness. She became a freelance writer, and uses her gift for words to bring recognition to health-related matters. In 2006, Scarecrow Press approached Kelly to write about JA for their It Happened to Me book series. This was her opportunity to give readers an inside glimpse at life with JA from the child’s perspective. After a year of researching, interviewing, writing, and editing, Juvenile Arthritis: The Ultimate Teen Guide was released in 2009.
Kelly, now 30, is national spokesperson for the Arthritis National Research Foundation (ANRF) and is a member of the board of directors. True to their mission of finding new answers to treat and cure arthritis, the ANRF uses ninety-one cents of every dollar raised to fund cutting-edge research. In her honor, they established The Kelly Award, an annual $75,000 grant for JA research.
Kelly also supports Creaky Joints, an online arthritis support community where she connects with fellow arthritis friends.
Refusing to be complacent or settle for less than she deserves, Kelly works, volunteers, attends physical therapy, drives a modified car, and is about to move into her own home. She is motivated to help raise awareness and find answers so other kids do not have to suffer.
“I believe answers are coming. Treatments are getting better, but we need more money for research. There are still challenges ahead, but we are progressing. We can do it.”