Juvenile Rheumatoid Arthritis
The morning routine at the Piper house isn't easy.
It's especially hard on 7-year-old Kate Piper, who often wakes up stiff and sore and sometimes with swollen ankles or a swollen knee, all symptoms of juvenile rheumatoid arthritis.
Twice a week her father, Chris Piper, injects her with methotrexate, a medication for the immune system, while her mother, Kristin Piper, holds her.
"It stings," Kate said.
Along with this morning routine, siblings Andrew, 5, and Madison, 9, also have to be woken up, fed and taken to school.
The Piper family, like thousands of other families in Kansas and across the country, has learned to adapt to living with a child who suffers from JRA.
But they want more than just to adapt.
Pipers go to Washington
Kate Piper and Mariah Morris, 7, of Conway Springs, along with their families, are representing Kansas at the Arthritis Foundation's Advocacy Kids' Summit in Washington, D.C., this week. They and 350 other attendees will tell members of Congress their stories of living with arthritis, said Dennis Bender, president and CEO of the Kansas Chapter of the Arthritis Foundation.
They and their parents hope to raise awareness about JRA, which affects approximately 300,000 children in the United States and 3,000 in Kansas, according to the Arthritis Foundation. Arthritis is also the leading cause of disability in the country, Bender said. There are several types of JRA, and the cause is still unknown, according to the Arthritis Foundation.
A main goal while at Capitol Hill is to push Congress to pass the Arthritis Prevention Control and Cure Act, Bender said.
One of the highlights of the act, in addition to investing in research and preventative education, is to offer tuition incentives for people to become juvenile rheumatologists because there are so few in the country.
Fortunately for Kate, she is close to Kansas University Medical Center, home to Dr. Carol Lindsley, one of the region's few juvenile rheumatologists.
Kate was diagnosed with JRA at age 2.
The first sign of problems was her swollen knee, right before she turned 1, her mother said.
"Chris and I had the old-school thought that arthritis happens when you're older," Kristin Piper said. "Kate was an early walker. Then her knee swelled up, and she stopped. She started limping a lot."
Trips to the doctor's office, something Kate said she dislikes, and X-rays showed no signs of arthritis.
Then there were problems with her vision; eye inflammation is associated with juvenile arthritis. Later, her fingers began to swell.
The cause of JRA is believed to be an autoimmune disorder.
Lawrence pediatrician Charles Loveland had seen a case of JRA before, so he pointed the Pipers to Lindsley, Kristin Piper said.
"That's why we're going to Washington to advocate for this, because she was lucky to have medical access right away and close by," Kristin Piper said.
Despite an early diagnosis, it wasn't soon enough to stop damage to Kate's right wrist.
Now in first grade at Langston Hughes School, Kate is learning to write.
"My wrist starts to hurt," she said. "I go to the nurse, and she lets me lay down with an ice pack or go back to class."
Kate's teacher, Linda Marshall, is understanding of Kate's condition because she raised a daughter, Bethanie, who had JRA. Bethanie Marshall is now a 19-year-old sophomore at Doane College in Nebraska.
Like Kate, Bethanie has had to skip out on sports and watch their active siblings from the sidelines. Bethanie can look back and see how the daily pain "became part of her," her mother said.
"She was a trooper just like Kate," Linda Marshall said. "They just kind of learn how to adapt. She's actually been in remission for the last four years. I'm really hoping that will start to happen to Kate."
The Kansas Chapter of the Arthritis Foundation is sponsoring Kate's and Mariah's participation in the Washington conference as a follow-up to last year's Arthritis Walks in Lawrence and Wichita, in which both girls fielded teams and raised funds for arthritis programs and research. Kristin Piper is on the Lawrence committee. She said she wanted to be involved because she felt "helpless" with her daughter's struggle.
"She gets sad sometimes, too," Kristin Piper said. "It's hard to see that. I don't know that pain.
"It's a lot to handle at seven years old and know that it's not going away."
Kate will be honored at this year's Lawrence Arthritis Walk on April 26.