Girl backs arthritis bill

A 6-year-old girl with short bangs and big, bright eyes bounced off the walls of her mother’s office, gnawed a piece of fried chicken, and checked off her favorite after-school activities: swimming, diving, ballet, tae kwon do, gymnastics, softball and tennis.

“On the days Zoe’s like this, things are good,” said Burbank resident Lizzette Schley. “She is just like the rest of her fellow kindergartners, except for one difference.”

Zoe was diagnosed in 2006 with ankylosing spondylitis, a genetic form of arthritis that causes the spine and joints to swell. Since then, she and her family have helped to raise money, increase awareness and lobby on behalf of federal legislation aimed at preventing, controlling and curing the often painful disease.

On the family’s trip this month to Washington, Zoe met with Sens. Dianne Feinstein and Barbara Boxer, as well as Rep. Adam Schiff, to ask for their co-sponsorship of the bill, which was introduced last month.

Called the Arthritis Prevention, Control and Cure Act of 2009, the bill seeks to strengthen arthritis public health initiatives, which would allow more people to be diagnosed early and avoid permanent disability, establish a database of children with arthritis, improve support for pediatric rheumatology training programs and establish a loan-repayment program for pediatric rheumatologists to address the shortage of these health professionals.

“It is crucial that we get more medical students to consider pediatric rheumatology,” said Jennifer Ziegler, program manager of the Arthritis Foundation’s Southern California Chapter and an arthritis sufferer herself.

The House bill is expected to move to committee after some changes are made, said Jennifer Taylor McBride, vice president of advocacy and public policy for the foundation. Companion legislation will be introduced in the Senate.

“In Washington, I wanted to ask them for help,” Zoe said.

“She hurts constantly,” Schley said, holding her daughter’s hand and pointing at her knees. “But the pain is so regular that I’m told she doesn’t know what it’s like to feel no pain. She only knows what pain feels like when things swell up and hurt even worse.”