Tuesday, April 8, 2008

Arthritis Advocacy

Today’s Washington Post has featured an Arthritis Foundation Advocate, 9 year old Eric Terry from Woodbridge, VA as he walked the halls of Congress with the other 400 advocates at the AF Advocacy & Kids' Summit. Next year, I hope to take Emma so she can be like Eric & talk about her sister to our Senators & Reps.

Its all about raising awareness of juvenile arthritis, the Arthritis Foundation and the critical need to pass the Arthritis, Prevention Control and Cure Act (S.626/HR.1283) and increase federal funding of arthritis research and public health.

Please read & hopefully we can help change the way arthritis research and public health is funded and health care policies are made. Http://www.washingtonpost.com/wp-dyn/content/article/2008/04/07/AR2008040702140.html

With Pain, Some Gains
Nine-Year-Old Seeks Help for the 300,000 Kids With Arthritis

Tuesday, April 8, 2008; C12

Eric Terry is like any other fourth-grader -- except when he's not. Yes, he plays basketball and baseball, loves pizza (with sausage) and longs for a dog. But he also has juvenile rheumatoid arthritis, which leaves his joints so swollen and painful at times that he lies in bed and cries.

Eric's parents were stunned when his condition was diagnosed at age 2. "Like many people, I thought: Kids don't get arthritis," father Reggie Terry says.

But they do. About 300,000 kids in the United States have arthritis (pronounced are-THRITE-iss). Eric, who is 9 and lives in Woodbridge, has become a spokesman for them, going with his parents to Capitol Hill recently to urge lawmakers to fund research aimed at finding a cure.

Juvenile arthritis is "very difficult to diagnose," says Patience White, a physician who works for the Arthritis Foundation. "A doctor has to make sure the symptom the young person is having isn't related to other things."

Sharp Pain, Sharper Comments
When Eric's immune system goes haywire -- attacking the tissue that lines his joints -- he feels pain in his knees, ankles, elbows, neck and back. "It hurts really bad," he says. The stiffness even changes the way he walks.


To beat the disease, a person needs to stay active.

"In basketball, I score a lot of points. In baseball, I can hit hard and am good at catching. I like golf, too," Eric says. He is able to play sports in part because of medication that keeps his joints mobile and his muscles strong.

Eric has learned to handle stares and the occasional mean comment at school. "It's real hurtful and stuff because there's not anything I can do about it," he says. If someone gives him a hard time, "I'm like, 'Hey, I have arthritis. I know you don't know what that means, but if you had it you'd probably cry.' "

The Arthritis Foundation helped the Terrys understand and manage his condition. Eric and his brothers -- Tony, 17, and Chris, 14 -- go on fundraising walks, and Eric has become a forceful spokesman for people with the disease.

Seeking Help on Capitol Hill
Getting help can be hard for some families. Arthritis medications are expensive, and finding a children's physician is not easy. There are fewer than 200 doctors in the United States who specialize in treating kids with arthritis.
Virginia, where Eric lives, has three. Maryland has two, and the District and 10 states have none, according to the Arthritis Foundation.

Knowing this is partly what brought Eric and other children with arthritis to Capitol Hill to talk to lawmakers and others about getting more funds for research on the disease.

Eric was asked what he planned to say to any senators he met. "I'm gonna be like: I have arthritis. It really affects me. I can't play as much. People laugh at me."

It was a long day as Eric, in a sleek suit and tie, and the others trekked across the marble floors for hours, from one office to another, telling their stories.

By afternoon, pain and fatigue showed on Eric's face. His pace had slowed. His right leg dragged slightly. After his last official stop, he paused in front of a congressman's office and slowly lowered himself to the floor. He rested his head against his mother, Cynthia.

When asked "Do you think it worked? Do you think you got through to anyone today?" he closed his eyes, smiled and nodded silently -- yes.
--
Brenna Maloney

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