One Day at a Time
Raising a child with rheumatoid arthritis
Photography by Jeff Amberg / Food Styling by Susan Fuller Slack, CCP
Imagine being a mother of four with a baby on the way and being faced with a 2-year-old little girl hobbling around with swollen knees twice their normal size. In 2008, this very scenario became a reality for Missy Moosbrugger. All those years ago, Missy discovered that Mallory, in the midst of her toddler years, was having trouble bearing weight on her right knee. Missy knew then that her daughter’s life was about to change drastically.
“We first took her to a pediatrician, then to the hospital, followed by an orthopedist visit and finally found out that we needed a rheumatologist,” says Missy. “The process took about two and a half months to finally figure out why her knees, ankles, wrists and fingers were swelling … doctors were nervous it was a bone infection.”
Missy had just given birth to her fifth child when Mallory was diagnosed with Polyarticular Juvenile Rheumatoid Arthritis. “We needed to find the cause of the problem so Mallory could at least crawl around and climb the stairs by herself,” Missy continues.
Finding a rheumatologist was the most important way forward. “It took a couple of weeks to get the dosage and the medications right, but once we found that balance, her response to the medication was probably one of the most encouraging things throughout this whole process,” she says.
The Moosbruggers had no family history of arthritis and were very surprised to find out that it was the cause of all of Mallory’s pain and swelling since she was only a toddler. One of the most overlooked facts of arthritis is that it can affect anyone.
The Truth on Arthritis
Two-thirds of people with arthritis are under the age of 65, and 300,000 are children. Arthritis is a complex family of musculoskeletal disorders consisting of more than 100 different diseases or conditions that can affect people of all ages, races and genders. Arthritis can take many forms but three of the most common diseases are: osteoarthritis, a progressive degenerative joint disease; rheumatoid arthritis, a systematic disease characterized by the inflammation of the membranes lining the joint; and juvenile arthritis, which serves as an umbrella term to describe many autoimmune and inflammatory conditions that can develop in children under the age of 16.
Missy has learned as much as possible about Mallory’s rheumatoid arthritis, its potential course and available treatments. “One of the scariest things,” Missy says, “is the unknown of looking into the future. Will she suffer from arthritis for the rest of her life? Will she go into remission? Will she be able to have children one day?” These are common questions from many parents and individuals suffering from arthritis. Missy must be proactive in monitoring Mallory’s symptoms and treatments and in handling the day-to-day challenges her disease brings.
Arthritis is a serious health problem that places a growing burden on the health care systems in this country. “Some states don’t even have a pediatric rheumatologist. We were lucky to have found ours in Charleston,” Missy says.
Each year, people with arthritis account for 44 million outpatient visits and 922,100 hospitalizations in the United States. It is the leading cause of disabilities and can be a crippling and life changing disease at any age. According to Madeline Thomas at the Arthritis Foundation in Charlotte, 5.7 million people are affected by doctor-diagnosed arthritis in the Mid-Atlantic Region of the United States and nearly one million are South Carolina residents — not to mention that 4,000 of those are South Carolina children.
“The prevalence of arthritis or chronic joint symptoms is surging and affecting over 50 million Americans. This is simply unacceptable,” continues Madeline. The Arthritis Foundation is the leading health organization addressing the needs of those 50 million Americans living with Arthritis. Founded in 1948, with headquarters in Atlanta, Ga., the Arthritis Foundation has many service points including those located in the Mid Atlantic Region spanning from Delaware to South Carolina. The Arthritis Foundation is the largest private, not-for-profit contributor to arthritis research in the world and helps individuals take control of arthritis by providing public health education, pursuing public policy and legislation and conducting evidence-based programs to improve the quality of life for those living with arthritis.
A Team Effort
Managing arthritis, especially rheumatoid arthritis (RA), requires a team approach. Just as in the beginning when Missy and Mallory had to visit multiple doctors to find the cause of the pain and swelling, the collaborative effort between doctors, family and friends is a continuous one. In Mallory’s case, as well as with many others suffering from RA, her primary doctor is a rheumatologist who is a specialist in internal medicine but also has additional training to diagnose and treat arthritis as well as related diseases that affect the joints, muscles, bones, skin and other tissues.
As treatment for RA progresses, many people see a variety of other health care professionals including orthopedists who specialize in diseases of the bone; physiatrists who direct therapy and rehabilitation programs; physical therapists who demonstrate exercises to keep muscles strong to prevent joint stiffness; and occupational therapists who teach patients how to reduce strain on their joints while doing everyday activities. The list can easily be expanded upon. The range of professionals a person suffering from arthritis deals with on a normal basis can also include psychologists, social workers, nutritionists, pharmacists and nurses as well.
In the end, 8-year-old Mallory is the most critical member of the disease-management team. “Mallory rarely complains. She works so hard with her physical therapist each week and doesn’t let her pain bring her down or put her in a bad mood. She has a high tolerance for pain. She’s never known any different,” Missy explains. “When we tried taking her off her medicine right before the first grade, I didn’t even notice she was swelling again until one night when we were sitting on the couch together. She never told me she was in pain and didn’t favor either of her legs. I don’t think she even noticed. However, we discovered that the medicine was still necessary.”
The Moosbruggers rely on Mallory’s doctors for treatment, prescriptions and advice, but they manage her own health and care. In addition to the talented health care professionals, Missy and Mallory have developed a network of friends who they can count on for emotional support. One of the best support groups Missy has found was actually through the Arthritis Foundation. “I networked through people I already knew but also expanded my horizons to other parents who had children suffering from RA. It’s nice to exchange stories and know that you’re not alone out here,” Missy says. The Arthritis Foundation offers an online community with blogs and support groups.
Jingle Bell Run
Missy found her niche in volunteering for the Arthritis Foundation and meeting people at its events. After making friends and being involved at the foundation in Oklahoma for about a year, the Moosbruggers then moved across the country and had to start all over. Having her Masters in exercise science, Missy had always been interested in the Jingle Bell Run, an Arthritis Foundation event each December, and when one finally came to Columbia, it was so convenient she didn’t have an excuse not to go.
The Jingle Bell Run is a perfect example of how the Arthritis Foundation wants to include everyone in the knowledge of how to prevent arthritis. For example, arthritis can be managed with weight control to prevent added stress on joints. The Jingle Bell Run promotes activity and well-being, no matter age or ability. “There is truly something for everyone — from a 5k run to a one mile walk. Everyone is invited,” Missy says. Have a baby? No problem, strollers are welcome. Have a dog? Bring him. “I have convinced so many people to participate by simply saying, ‘Hey come out and walk a mile.’”
Mallory Moosbrugger was the 2013 Youth Honoree for the Jingle Bell Run in Lexington. Planning on just walking a mile, Mallory was so inspired by all of the runners being there for her that she ended up walking three!
“She had this silly little grin the whole day,” Missy says. Opportunities like this have made it possible for Mallory to see so many people become involved, donate and volunteer no matter their lifestyle. The Arthritis Foundation prides itself on doing just that: getting more people involved, sharing knowledge and hopefully preventing arthritis in the long run.
The Way Forward and How To Get Involved
As the world’s largest nonprofit contributor to arthritis research since 1948, the Arthritis Foundation provides innovative grants that empower young and established scientists to study new ideas that could lead to the miracle medications of the future. The Arthritis Foundation’s leadership does not stop here. It drives the research agenda by developing and supporting specialized and targeted research initiatives to eventually reach a cure. To do this, the foundation has forged partnerships with other health agencies, foundations and private industry partners.
The Arthritis Foundation and the individuals who suffer from the disease need the help of others in the community. There are many options to get involved, including becoming an E-Advocate, an Arthritis Ambassador, contact Congress, or simply volunteer and attend Arthritis Foundation events like the Jingle Bell Run to name a few. Children, like Mallory, and adults alike need support from the community in order to persevere and work toward a cure.
For more information on the Arthritis Foundation and ways to get involved visit http://www.arthritis.org/conditions-treatments/understanding-arthritis.