WASHINGTON—Before lupus stole her life, Carin Dickmeyer walked Capitol Hill as a youthful intern.
Last week, she returned as an amateur lobbyist with a cause close to her own suffering heart. A 28-year-old Californian, Dickmeyer joined other lupus patients in pressing Congress to help fight the autoimmune disease.
"We understand there are lots of horrible diseases," Dickmeyer said, but "we're asking for equality, for our share."
Some 300 activists organized by the Lupus Foundation of America convened last week. They're pushing for a bill authored by Rep. Kendrick Meek, D-Fla., to expand lupus research and monitoring. They want to slide other research dollars into the Pentagon's budget and expand a patient registry already begun in Georgia and Michigan.
But lobbying can be hard when you can't get out of bed and you can't fall asleep. When your nose won't stop bleeding for two hours. When you need the fingers of both hands to count your daily meds. When the drugs and disease tug your mind this way and that.
When concentration dissipates.
"People don't understand it because you look OK," Dickmeyer said, but "it's a horrible thing. Who wants this life? It's torture."
Diagnosed five years ago, Dickmeyer is now one of about 1.5 million lupus patients in the United States. The disease can inflame and damage nearly every human organ, as the immune system's antibodies attack healthy tissue.
It's also tricky: There's no single diagnostic test, and the symptoms can cover the waterfront. The estimated 183,000 patients in California, or 87,000 patients in Florida, or 44,000 in Georgia—each has his or her own story.
More women than men get the disease. African-Americans and Hispanics are two to three times more likely than whites to be affected.
Dickmeyer began encountering problems while attending college in San Luis Obispo, Calif. She was studying political science and finance and relishing the thrill of internships with the likes of Democratic Sen. Barbara Boxer.
Then, in January 2002, her body turned on her.
Her hair began falling out. Food lost its taste. She lost weight, dropping about 80 pounds. Night sweats drenched her; fever burned her. Her heart raced, a rattled engine. One morning, she awoke and the world was in black and white. Then she fainted.
"I've never been beat up," Dickmeyer said, "but it felt like someone just manhandled me."
In time, doctors diagnosed her and dialed her into a growing list of medications.
She takes methotrexate, which cancer patients also use. She takes prednisone, a steroid that causes insomnia. Ambien helps her sleep.
Percocet and Vicodin dull pain. Accutane solved the bad acne caused by another drug. She has medication for her heart, her stomach, her head.
"There have been no new drugs approved by the Food and Drug Administration specifically for lupus in nearly 40 years," the bill introduced by Meek and seven other House members notes. "While current treatments can be effective, they can lead to damaging side effects."
Congress in the past has urged the National Institutes of Health to provide "the highest possible funding" for lupus research, but has steered clear of identifying exactly how much that should be.
At present, Dickmeyer's circumstances don't allow her to work. She can't touch alcohol because it would bring on a fever. Stress sickens her. She had wanted to go to law school, but that's out of the question. Perhaps, she now says, she can find a way to become a full-time lupus activist.
"I feel like it's a responsibility I have," Dickmeyer said. "I can't complain unless I'm doing something about it."
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(c) 2007, McClatchy-Tribune Information Services.
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