Newtown Girl Puts A Face On Juvenile Rheumatoid Arthritis

By Nancy K. Crevier

Twelve-year-old Sara Matté of Newtown has a special invitation for friends, neighbors, and residents of Newtown and surrounding towns: join her in the 2012 Danbury Arthritis Walk, Sunday, May 6, from 9 am to noon, at the Western Connecticut State University O’Neill Center. Sara is one of four 2012 Youth Ambassadors for the annual walk to find a cure for arthritis, a goal that she can only hope will come sooner rather than later.

Sara, the daughter of Kristin and Brian Matté, and the sister of 14-year-old Devin, was diagnosed seven years ago with polyarticular juvenile rheumatoid arthritis (JRA), a potentially crippling disease that affects nearly 300,000 children in the United States, 3,400 of whom are here in Connecticut. It is the second most common chronic childhood disease, behind arthritis, but many people, said Kristin Matté, are unaware that arthritis is not a disease only of the aged. “People don’t realize that many children have arthritis, and we want to raise that awareness,” she said.

The cause of JRA is unknown. According to the National Library of Medicine, JRA is thought to be an autoimmune disease, meaning that the body’s immune system mistakenly attacks and destroys healthy body tissues. Polyarticular JRA involves multiple joints, causing swelling, pain, and fever. It attacks cells in the joints, which causes stiffness and swelling. JRA can also affect the eyes, contributing to vision problems or blindness, if left untreated.

By the time Sara was diagnosed, after visits to five specialty doctors, two procedures to drain a cyst on her wrist, and surgery on that cyst, all of the joints in her fingers, hands, wrists, toes, feet, ankles, and neck were affected. It was when the large cyst appeared on Sara’s wrist, and when she began to cease eating that the Mattés became gravely concerned. The pain that children with JRA suffer can lead to loss of appetite.

Sara was tested for numerous diseases, including Lyme, and they considered food allergies as the source of Sara’s troubles. Like so many others, they had never heard of children getting arthritis, so they did not explore that route initially.

“Sara couldn’t grasp door handles, and she struggled with zippers and buttons, or to tie her shoes. We were thinking it was part of normal developmental patterns, but by the time she was 5, we wondered why she still couldn’t open a door? She complained about being tired when we walked any distance, but we thought it was just the usual whining children will do,” Ms Matté said. “We did end up using the stroller a lot more for Sara than we had for Devin,” she recalled. What Sara did not complain about was the pain, and in retrospect, said her mother, it must have been great.

“But she didn’t know it was not normal. It had probably increased slowly over time, but because she had always been in pain, she didn’t know to complain,” Ms Matté said.

“I don’t really remember a lot,” admitted Sara, “but I do remember that when I walked for a long time, it hurt. I remember [that before I was diagnosed] I couldn’t run real fast, or jump on a trampoline.”

JRA has been diagnosed in children as young as 6 months, but Ms Matté said that she and her husband are unsure of how long Sara suffered from the disease before they were directed to a rheumatologist at Connecticut Children’s Medical Center in Hartford.

The rheumatologist put Sara on medication to reduce pain and swelling, and for the first time, Sara, then 5 years old, experienced relief.

“After just a week, she said to me one day, ‘My hand feels good!’” Ms Matté said. Sara also began physical therapy at the time. Although lessened, the symptoms did not go away. “There were still mornings when she was so stiff that it was hard getting up, and she would walk around holding her hands,” said Ms Matté. “She couldn’t straighten her fingers.”

Sara switched to a regimen of biologic drugs, a live virus shot that prevents her body from producing more cells that affect the joints, and the cancer drug Methotrexate, which destroys any of those joint-damaging cells that do form. The biologic drug Embrel helped Sara immediately, but two years ago it became ineffective and she switched to a Humira, in search of continued relief.

“I don’t like taking all the medications,” said Sara, despite the fact that they allow her to lead a mostly normal preteen lifestyle. The effects are sometimes debilitating. The first pain medications she was prescribed gave her ulcers, so an alternate drug had to be found. Methotrexate causes her to feel nauseous for nearly 24 hours after she takes the biweekly dose, and combined with the other drugs, leaves her feeling tired. Because Methotrexate can affect liver health, every two months Sara must have her blood tested to monitor the liver.

The hard thing, said her mother, is being aware that heart failure, fevers, sweats, and stomach pain are other possible side effects of the powerful drug. “But,” she said, “Methotrexate is also the only drug that has even a slight chance of actually curing JRA.”

Ms Matté must also suffer along with her daughter when she administers the shots. “It is heart-wrenching to give a shot to your child when she is screaming from how much it hurts,” she said.

Nonetheless, the Mattés are grateful that Sara was diagnosed properly and that there are medicines to control most of her pain and stiffness. She can now easily open doors, button buttons, and weekly therapy allows her to hold a pencil comfortably. Her school, Reed Intermediate, has offered to let Sara use a computer if writing with a pencil becomes too difficult.

“I haven’t had to do that yet, though,” said Sara.

An Invisible Disease

Sara, although slight of build, is indistinguishable from many of her peers. JRA, when controlled, is an invisible disease. So every fall when school begins, Sara talks to her class about her disease. That way, they understand when she has a bad day, she said.

An important therapy for children with JRA is remaining active, and Sara happily complies with that. Running and jumping on a trampoline are no longer a problem most days, nor is turning cartwheels across the lawn. She has played softball since 2010, loves to ride her bike, and in the winter, skis with her family. She has also recently tried archery.

But if there is an upside to JRA, said Sara, it is the week she spends each summer at the sleep-away camp, Camp Dartmouth Hitchcock, in Vermont. A portion of the money raised at the annual 3.1-mile walk goes toward funding the camp that is geared toward children with rheumatologic conditions.

“In the summer, I like to swim when I go to the arthritis camp in Vermont,” said Sara. “I’ve met a lot of people there, and all of the activities are activities [kids with arthritis] can take part in.” The camp offers Sara the chance to try canoeing, and a ropes course, as well, modified to accommodate the disease. Because some of the children at the camp are in wheelchairs or on crutches, or like Sara, find themselves exhausted by medications, golf carts are available to take children from their cabins to activities, if needed.

“It’s easier, when everyone understands what I have,” said Sara, and she stays in touch with two of the girls she has met at camp throughout the rest of the year. And that includes staying in contact by texting — a skill for which she has the dexterity, due to the success of her medical treatment to date.

Polyarticular JRA is a disease that Sara will have to manage through therapy and medication her entire life, unless a cure is discovered.

“Team Sara” hopes to raise $5,000 at the Danbury Arthritis Walk to donate to research to find that cure. They are already nearly half way to that goal.

“Eighty percent of what is raised at the walk goes directly to children’s programs or research, to funding camp, and to family activities,” said Ms Matté. The walk also serves as a way to educate people about JRA and raise awareness, she said.

For the past three years, friends and family have joined them at the Danbury Arthritis Walk, and they are hopeful that this year they can muster more participation than their best year, when 40 people walked with them on Team Sara.

As a Youth Ambassador, Sara will give a brief speech prior to the walk. “Sara’s job,” said her mother, “is to put a face on juvenile rheumatoid arthritis.”

Registration for the Danbury Arthritis Walk is at 9 am, at the O’Neill Center, or online at www.DanburyArthritisWalk.org. The walk begins at 10 am. To donate to Team Sara, visit www.danburyarthritiswalk.org, choose Donate, and then select Donate to a Team. Detailed information about the May 6 walk can be found at the website.