Lupus sufferers loop the Capitol for a cure

By CATHERINE BYRNE
Capital News Service
LANSING — Galien resident Vicky Block spent over a year going to dermatologists trying to figure out what the red bumps on her body were.
Dermatologists and physicians alike were stumped. The Berrien County woman was then referred to the Mayo Clinic where she was diagnosed with lupus after one week.
The Michigan Lupus Foundation held a “loop the Capitol” gathering in Lansing on Monday to raise awareness about the mysterious disease.
“We chose April Fool’s Day because this disease fools everyone, including doctors,” Block said.
Lupus is an autoimmune disease in which the body attacks its own tissues. Symptoms vary widely from sufferer to sufferer and often masquerade as other afflictions. Untreated, lupus can involve damage to the heart, kidneys, liver and cornea. Joints often swell painfully, migraines and nausea can develop.
The group sold more than 40,000 orange hospital bracelets for $1 each as a fundraiser for research money. The bracelets were looped together in a chain and held by lupus sufferers and supporters around the state house.
Lupus sufferer Rex Smock of Owosso called on his area legislators, Rep. Larry Julian, R-Lennon, and Sen. Valde Garcia, R-St. Johns, to speak at the event. Lansing Mayor David Hollister also spoke.
Julian questioned when lupus was going to receive the same amount of attention as other autoimmune diseases.
“When are we going to take an attitude that we need to find a cure and we need affordable healthcare for lupus sufferers?” Julian asked.
Hollister praised the continued efforts from MLF.
“It doesn’t take big numbers to make an impact,” he said. “It takes unity and dedication, which is why all of you people are here today.” Hollister also said lupus sufferers outnumber muscular dystrophy, multiple sclerosis, leukemia and AIDS sufferers combined.
Smock spoke of when he was diagnosed with systemic lupus erythematosus, SLE.
“When I was diagnosed, I looked at my wife, she looked at me, and I said, ‘What’s lupus?'” Smock said. “I wanted to know if there was a cure, and no one in the area knew.”
Block agreed that lupus sufferers’ biggest challenge is getting information about the disease.
“There are so many general practitioners and interns not equipped with the knowledge to treat and diagnose lupus,” she said.
Block’s husband, Chris, said lupus’ mystery is in its diversity.
“With most diseases, there’s a ‘classic case,'” he said. “Lupus manifests itself in so many ways, it’s extremely difficult to identify.”
Tom Roberts, executive director of MLF, said raising public awareness is the first step in raising funds.
“What this is really about is getting research dollars,” Roberts said. “We need to let people know lupus is worthy of their contributions to find a cure.”
Roberts said finding a cure for lupus would lead to curing other autoimmune diseases.
“Lupus is a prototype,” Roberts said. “If lupus is cured, then the rest of these diseases are cured.”
Monica Gilliam, a member of MLF’s board of directors and a lupus sufferer, spoke of her first encounters with SLE.
“In walked this uninvited, unwelcome, intrusive guest called lupus and changed my whole life and the lives of my family forever,” Gilliam said. “It’s a continuous uphill battle.”
Another task of MLF is to have lupus qualify as a disability under state regulation, Gilliam said.
“We need to be heard when we apply for disability even though we might look well,” Gilliam said.
Smock said the public is willing to help in any way once they are aware of the disease.
“People want to know about lupus,” he said. “They open their wallets and they open their hearts.”
© 2002, Capital News Service, Michigan State University School of Journalism