Fighting back at pain

Santa Fe girl travels to Washington to lobby for battle against juvenile arthritis

Sue Vorenberg | The New Mexican

3/6/2008 - 3/7/08

Megan Belzner doesn't talk like most 13-year-old girls.

She carefully enunciates each word and can quickly and easily explain complicated topics — like polyarticular juvenile rheumatoid arthritis, or how a bill makes its way through Congress.

She has a maturity she's earned through years of pain, from a disease — arthritis — ironically most often associated with mature or elderly people.

And now the bright, articulate eighth-grader at Santa Fe School for the Arts and Sciences wants to do something to help other kids in her situation, including many who might not even realize that arthritis can, indeed, sometimes be a childhood disease.

"I've been doing pretty well for the past couple of years, because of the medications I'm on, but other kids don't always have the medical coverage I have," Megan said. "And even with the medication, sometimes when I get up, my fingers are really, really stiff. I can't even open a bottle sometimes."

And even though she's doing well, on a typical day her hands are only about half as strong as those of a normal teenager, and she can't run as fast as her friends, she said.

"It's kind of frustrating not being able to keep up," she said.

Juvenile rheumatoid arthritis is an autoimmune disorder in children under age 16 that causes the immune system to attack healthy cells and tissue. It causes inflammation, pain, redness and swelling in the joints.

Scientists think it's caused by a combination of genetic factors and environmental triggers, like a viral infection.

Megan and her mother, Margaret Mayer, recently went to Washington, D.C., to encourage U.S. Sen. Pete Domenici, an Albuquerque Republican, to sponsor S626, the Arthritis Prevention Control and Cure Act, and give it a stronger focus on helping kids with juvenile arthritis.

"I'd like to see more funding for somehow possibly curing arthritis, and getting care to people who couldn't get it before," Megan said.

Megan must have made an impression, because Domenici has decided to co-sponsor the bill, his spokesman, Chris Gallegos, said.

"Arthritis is a terrible disease and it is tragic when it strikes our youth," Domenici said in an e-mail to The New Mexican. "I appreciated meeting Megan and her mother. I have always been interested in having the federal government advance health research, and I hope Congress can make progress on this bill to put more focus on juvenile arthritis."

Megan said meeting Domenici was "cool" and it was fun on her trip to learn on a deeper level how the government works — and how her bill is making its way through Congress.

"The bill has been sent to markup for an edit," Megan explained when asked about its progress. "That might sound like a simple thing, but it's actually a big step in getting a bill passed."

It's been a long road for Megan, who was diagnosed with arthritis just before she turned 2 years old. Before that, the disease was something her mother had never heard of in children, Mayer said.

"It was an interesting process figuring out what was wrong, because none of the doctors knew what it was," Mayer said. "She started walking early, then she quit walking all together. It hurt too much."

One of the first phrases Megan said was "Mommy, pickup," Mayer said.

"I'd put her in one place, and she'd want to move but it hurt to walk, so she'd say 'Mommy, pickup' and I'd move her somewhere else," Mayer said.

And it was Mayer, not the doctors, who read up on Megan's symptoms and figured out that her daughter had arthritis, she said.

"They did a blood test, and found arthritis, but there really was nowhere in New Mexico to go (for a children's specialist) after finding that out," Mayer said. "We had to go to Albuquerque to an adult rheumatologist, who treated all the kids with arthritis in the state."

That's a lot of kids, considering a recent Centers for Disease Control and Prevention study estimated about 2,000 kids in New Mexico and 300,000 kids nationally have arthritis, Mayer said.

"We wanted to get Megan better care, so we took her to a hospital in Chicago, which is where my family is from," Mayer said.

There, at age 2, doctors put a port in Megan's chest, and she spent one and a half hours every week hooked to IV steroids. After that, she spent a month in physical therapy before coming back to New Mexico, Mayer said.

"We were lucky," Mayer said. "When you see her today she looks perfect. But other kids, kids without health care, they often end up crippled for life."

Today, Megan gets a shot of Enbrel once a week and takes Celebrex twice a day.

For the most part, she's not in pain, Mayer said.

It was worse a few years ago, when the medication wasn't as good, but Megan never complained much, Mayer said.

"The disease has made her a kid that almost never reports pain," Mayer said. "She's gone in with ear infections before and the doctor wonders why she's not screaming or passed out."

Megan's not one to dwell on her problem, though.

She's found things to replace the physical activity she says she wishes she were better at — like working with computers and solving puzzles, which one day might turn into a career, she said.

"Right now I'm thinking about being a computer scientist," Megan said. "I'm pretty far away from getting a job right now though."

In the meantime, she'll have to settle for lobbying Congress for her cause.

"It was really cool to be in Washington and to meet Senator Domenici," Megan said. "And it was great that the people we were talking to thought this is a good cause."

Contact Sue Vorenberg at svorenberg@sfnewmexican.com.