A Childhood Illness That’s More Common Than You Think
By Amanda McGregor
|Meghan Kynett, 14, doesn’t let her juvenile arthritis interfere with two of her loves – playing soccer and riding horses.|
Camryn Connolly’s disease struck without warning when she was 2½ years old. “She woke up crying and she couldn’t walk,” her mom, Mary Connolly, recalls. “We picked her up and put her on the floor, and she pretty much collapsed.”
Mary and her husband, Eric, rushed Camryn to the emergency room, where doctors determined that she probably had a virus. But for six years, Camryn suffered agonizing joint pain and gastrointestinal issues, and her family endured harrowing medical tests for conditions that ranged from Lyme disease to cancer.
“I remember when she was at preschool, some days I would literally have to carry her out of school. It was heartbreaking,” says mom Mary Connolly. “We kept a log of when she was feeling bad. Some days, her joints were swollen and red and she couldn’t get out of bed. One minute she was fine, the next minute she was throwing up before school in the parking lot.”
Camryn was 8 when she was finally diagnosed with spondyloarthropathy, a form of juvenile rheumatoid arthritis. Her parents said the diagnosis brought a mix of relief and anguish, and forced them to educate themselves about a disease they had never heard of.
“Almost my entire family and all my friends were shocked to hear that children can get arthritis,” Mary says. “People think it’s an old person’s disease.”
To the contrary, approximately 300,000 children nationwide are affected by a form of juvenile arthritis and rheumatologic conditions, according to the Arthritis Foundation. It’s one of the most common chronic childhood diseases, occurring as often as juvenile diabetes.
“That’s usually the first thing that parents say – that they didn’t even know kids could get arthritis,” says Marc Natter, M.D., an assistant professor of pediatrics in the Tufts University School of Medicine’s Division of Pediatric Rheumatology. “Chronic arthritis is something most people are unaware of; even a lot of pediatricians get very little training” in juvenile arthritis.
Living with “Hidden” Disease
Now 12 and in sixth grade,, Camryn Connolly takes medication daily, receives occupational and physical therapy as needed, and sees a rheumatologist every 12 weeks for a checkup and blood work to ensure that her organs are functioning properly.
Camryn is an accomplished artist, who also plays flag football, basketball and baseball. Most of her pain is in her feet, knees and hands, and she has a scribe to assist her in school when it’s too painful to write.
“What bothers me the most is when someone hears about her disease and they say, ‘Well, she looks normal,’” says Mary Connolly. “Well, she is normal, but she has a disease that people don’t understand. Every day, she is in some sort of pain, which is heartbreaking for us.”
Arthritic children’s happy and healthy appearance often belies the pain. “One of the things we find from kids, especially teens, is that they feel people don’t appreciate the disease,” says Natter, who sees patients at the Floating Hospital for Children at Tufts Medical Center in Boston. Symptoms can fluctuate day-to-day, and even hour-to-hour with this “hidden disease,” he says.
“Adults think [the kids are] sort of malingering or being wimps when they’re stiff or feeling tired or have pain in their joints,” Natter says. “Kids with arthritis need more frequent breaks for stretching. If they’re in long car rides or sitting at a desk for a long time, they feel a lot worse when they get up. We routinely write notes for them for school.”
That has been a persistent source of frustration for 14-year-old Meghan Kynett and her parents.
“One day could be the best day ever, and the next day it’s hard to walk and it hurts to turn my head,” says Meghan, who just started her freshman year in high school. “Everyone should know about my condition so that I don’t get yelled at for taking the elevator or they don’t just assume I am procrastinating when I’m walking slow in the hallway.”
Kynett’s parents readily speak about the disease to try to educate others and to ensure that children don’t go misdiagnosed or undiagnosed, as their daughter did for four years.
“I’ll never forget that and I’ll never forgive myself as a parent, but I just didn’t know,” says mom Julie Grant Kynett, who is a preschool teacher. “When Meghan was 4, 5 and 6 and started to experience pain, imagine if someone came to me at that point and said, ‘Did you know kids could get arthritis?’ Maybe things would be different.”
Ever since their daughter Sydney was diagnosed with juvenile idiopathic arthritis in 2008, parents Gayle and Chris Lang have sent letters to her teachers, school nurses and coaches to help them understand her condition.
As is common for children with arthritis, Chris Lang says they’ve tried several different medications and dosages for Sydney and that she’s had steroid injections in her wrist and knee. Sydney says her knee, ankle and wrist can hurt, especially in the morning.
“I was really familiar with arthritis in the adult population, but I had never seen it in children,” says Gayle Lang, an occupational therapist. “What was surprising to me was the way arthritis is treated now, versus even 10 years ago. It’s very aggressively treated with pretty high-level medications in children. Traditionally, you maintained things as long as you could. Now the goal is to not have joint damage.”
This month, Sydney, a fourth grader, will be one of the ambassadors at the annual Boston Arthritis Walk. The walk benefits the Arthritis Foundation, which is dedicated to the prevention, cure and treatment of the disease.
The foundation promotes daily physical activity, which reduces arthritis pain and disability. So as much as it hurts sometimes, many children fight through pain in order to stay active.
“Regular physical activity is shown to help symptoms,” says Gayle. “So really, whatever she can tolerate she’s encouraged to do, and then some.”
Many of these kids embrace being active, in spite of the disease.
“I’m a soccer player, a ballerina, a tap and jazz dancer, and so much more,” says Meghan Kynett. “I love horses so I love to ride. I do need my breaks and I have limitations some kids might not, but it’s still better than doing nothing. I try to be as normal as I can.”
What is Juvenile Arthritis?
Juvenile arthritis (JA) is considered an autoimmune disease because the immune system is attacking the joints. Most of the symptoms are due to inflammation.
“The term ‘juvenile arthritis’ is very broad,” says Marc Natter, M.D., an assistant professor of pediatrics in the Tufts University School of Medicine’s Division of Pediatric Rheumatology, “and the more we learn about it, the more we learn all the types of diseases this comprises.”
Although there’s currently no cure for arthritis, early diagnosis and treatment are the keys to more successful treatment and to limiting joint damage.
Types of Juvenile Arthritis
• Polyarticular juvenile rheumatoid arthritis (also called juvenile idiopathic arthritis) typically affects five or more joints, most commonly the knees, wrists and ankles, and it affects girls more frequently than boys, according to the Arthritis Foundation.
• Pauciarticular juvenile rheumatoid arthritis (also called juvenile idiopathic arthritis) typically affects four or fewer joints, often a joint on one side of the body, and may cause eye inflammation (called uveitis).
• Systemic onset juvenile rheumatoid arthritis affects boys and girls equally. It causes high, spiking fevers of over 103º F that can last for weeks, even months. It also causes a rash consisting of pale, red spots on the child’s chest, thighs and sometimes other parts of the body. And it results in arthritis in the small joints of the hands, wrists, knees and ankles.
Find More Resources
The Arthritis Foundation provides information about juvenile arthritis, including resources for parents regarding diagnosis and disease process, daily life, school success, advocacy and networking with others.
Amanda McGregor is a freelance writer in Somerville, Massachusetts.
Originally published in the Boston Parents Paper, September, 2010.