Archive for Tuesday, February 26, 2008

Student heads to nation’s capital for Arthritis Foundation summit

Kate Piper, 7, left, and her mother, Kristin Piper, of Lawrence, are in Washington, D.C., this week to speak to members of Congress about arthritis in children. Kate has juvenile rheumatoid arthritis and receives shots of methotrexate twice a week to help boost her immune system.

Kate Piper, 7, left, and her mother, Kristin Piper, of Lawrence, are in Washington, D.C., this week to speak to members of Congress about arthritis in children. Kate has juvenile rheumatoid arthritis and receives shots of methotrexate twice a week to help boost her immune system.

February 26, 2008

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Kate Piper, 7, left, and her mother, Kristin Piper, of Lawrence, are in Washington, D.C., this week to speak to members of Congress about arthritis in children. Kate has juvenile rheumatoid arthritis and receives shots of methotrexate twice a week to help boost her immune system.

Kate Piper, 7, left, and her mother, Kristin Piper, of Lawrence, are in Washington, D.C., this week to speak to members of Congress about arthritis in children. Kate has juvenile rheumatoid arthritis and receives shots of methotrexate twice a week to help boost her immune system.

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's struggle

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.

'A trooper'

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.

Comments

compmd 7 years, 4 months ago

I started living with a relative of JRA when I was 9. Unfortunately, it took the better part of five years before I was correctly diagnosed. Finally a juvenile rheumatologist was able to connect the dots and was able to successfully treat me. I asked her how she figured it out, how she knew what was going on. She looked at me and said, "I have it too."

Adapting to fight a condition like JRA and live with it isn't easy. I gave up contact lenses and picked up a knee brace. I always hated needles, but the constant need for them due to infections inducing reactive arthritis and methotrexate treatment got me used to them. Methotrexate shots suck. I got lucky and ended up just needing pills in the end.

After years of medication and working out to keep myself flexible, I was finally able to start reducing dosages with the ultimate goal of being free from medication. Its been almost seven years that I've been free from medication, and I lead a pretty normal life. Instead of constant inflammation and pain, now just every once in a while will the arthritis remind me that its there.

I hope the parents of the children in this article read my post and tell their kids that yes, you really can make it through all the shots, doctor visits, and pain, and life goes on.

Thank you LJW for publishing this article.

Unix_Admin 7 years, 4 months ago

WOW! Kate looks just like her dad! Well, except for the hair.

laresident 7 years, 4 months ago

Best to Kate and her family. What a sweet, brave girl and how fortunate that she has Linda Marshall as a teacher. Ms. Marshall is one of the finest teachers in the Lawrence school district. All of our 4 children had her for the first grade and she made each one love school and learning. What a perfect fit for Kate!

pattyd 7 years, 4 months ago

Thanks so much to the Lawrence Journal World for this important article. Arthritis and arthritis related diseases are often overlooked in our country as just "an old person's disease" or "just aches and pains I have to live with". This is simply not the case. Thanks to Kate and Kristen's courage, the message is getting out. There is so much more that can be done to help people with arthritis. To learn more, visit the Arthritis Foundation website at www.arthritis.org. Remember to support Kate at the 3rd Annual Lawrence Arthritis Walk on Saturday, April 26th at the Lawrence Indoor Aquatics Center.

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