One girl's refusal to stop life for lupus

Published May 3, 2007

Like kids at any career night, those of Youth Alive posed plenty of questions for me and the other professionals who showed up at Kid City.

But one student from the Children's Museum of Tampa's teen leadership program asked me for something more: a story about lupus.

Marche pronounced mar-SHAY Brown, a 15-year-old Jefferson High freshman, played on the junior varsity basketball team this season. The challenge proved more daunting than dribbling through opponents and boxing out for rebounds.

She could play only briefly before losing her breath. Sometimes, headaches and joint pains forced her to the bench.

"Sometimes I'm not able to walk or even shoot the ball, " Marche said.

The difficulties stem from lupus, a disease in which the immune system attacks the body's cells, inflaming and damaging tissues. It affects people of all ages, including children, but it most often strikes people between the ages of 15 and 45. Women account for 9 of 10 cases; and African-American women have triple the risk.

The life-threatening illness can affect the skin, joints, kidneys, lungs, vessels, brain and heart.

In the case of Marche, lupus hasn't affected her courage.

After explaining that I often write about nonprofit efforts, she waited for the other kids to walk away and then she quietly but firmly asked if I could write about the Alliance for Lupus Research's Walkathon being held May 12 at Tampa's Al Lopez Park.

In making the request, she exuded a quiet confidence. Despite her illness, she dreams of playing in the WNBA.

How could I say no?

Stephanie Chapman, southeast regional fundraising coordinator for the Alliance for Lupus Research, said Marche's tenacity is common among lupus patients.

"I see that every day and it inspires me, " said Chapman, based in Tampa. "Their hopefulness, their positive attitudes, it just amazes me. These are all my friends."

New York Jets owner Woody Johnson founded the alliance seven years ago because of a family connection. In that time, it has raised $42-million for research. Chapman said there are eight new treatments in the pipeline, and four have come from the alliance's "cutting edge" research.

If approved, these new treatments would be the first new breakthroughs in 40 years.

Lupus has not garnered the attention and support that other debilitating diseases draw, even though some estimates suggest more than 1.4-million nationally suffer from lupus.

Marche Brown doesn't simply suffer. She does something about it, even if it means walking 3.1 miles or getting a reporter to tell her story.

That's all I'm saying.

Ernest Hooper can be reached at hooper@sptimes.com or (813) 226-3406.

Fast Facts:

Walk With Us To Cure Lupus

When: May 12, check-in at 9 a.m., 5K walk at 10 a.m.

Where: Al Lopez Park, 4900 N Himes Ave. Tampa.

More Info: walk.lupusresearch.org or (813) 258-5816.