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« on: June 11, 2007, 03:56:08 pm » |
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Young girl fights lupus into remission, regains normal life Jaclyn Gallegos had such a severe case of lupus in 2005 that her test results startled TriCore laboratory technicians in Albuquerque.
Multiple organs in her body were under siege. The doctors who diagnosed her at Presbyterian Hospital told Jaclyn that her kidneys were like a spaghetti strainer that had been hammered until it had big holes in it, allowing blood and protein to seep into her urine. They were functioning at one-third of what is normal, and she was anemic.
Lupus is a chronic autoimmune disease that can cause kidney damage, arthritis, heart problems and other illnesses. In children, it can be especially ruthless and hard to detect.
As Jaclyn plunged into an aggressive treatment regimen, including chemotherapy, she watched her active lifestyle slip away in fifth grade.
Before she was diagnosed, Jaclyn competed in wrestling matches, cheered at basketball games and played clarinet. But after the lupus took hold, she tired quickly and got confused a lot. Sometimes she had to put a surgical mask on her face to guard against germs.
By sixth grade, though, she felt well enough to join the basketball team.
Over time, with treatment her symptoms began to subside, making seventh grade a more carefree year. This past year, she was on the cheerleading squad, spinning through the air. And she was a merit student — an indication that her ability to concentrate is improving, her mother said.
"I feel more normal," Jaclyn said. "And I don't have to worry about the lupus."
Last spring, Jaclyn complained of hand and foot pain — a sign the lupus was acting up. Her nephrologist, Dr. Robert Miller, increased her prescription for Prednisone, a drug used for suppressing the immune system and one of three medications that help tame the disease. Within two weeks, the pain was gone and hasn't returned.
Soon, Miller declared Jaclyn's lupus to be in remission.
"It took us a little longer to get her into remission because she had so many symptoms and so many organ systems affected," Miller said.
Two years ago, Jaclyn had a puffy face, the hallmark dark mask of lupus circling her eyes and hair thinning from chemotherapy.
Today, at age 13, a healthy glow radiates from Jaclyn's face and the mask has disappeared. Her brown hair is thick and curly.
Just 10 years ago, treatments for lupus were less effective.
Now, more than 90 percent of children with lupus achieve a degree of remission, though some may be left with chronic kidney disease, Miller said.
The doctors predicted Jaclyn would go into remission after two years of intense treatment, but Jaclyn said she didn't believe it would ever happen because her laboratory numbers were so high.
She never gave up, though, and she says that's the lesson she has learned from lupus. Don't give up.
Jaclyn's hard work and a consistent regimen of pills every morning and night has paid off. She hopes that one day she'll be able to live a pill-free life and become a veterinarian.
She still takes nine pills a day. And she still has monthly blood tests and monthly checkups with Miller.
No one in the Gallegos family casually throws around the "R word" — remission — even though Jaclyn's doctors says she is officially there.
Instead, Jaclyn refers to it this way, "I'm negative." Jaclyn's anti-nuclear antibody count, a marker of the diseases activity in the body, has dropped from 10,500 to zero.
The trouble with remission is no one can say how long it will last. Lupus, which means "the wolf" in Latin, could become active and intrude again.
Michael and Connie Gallegos understand the hurdles Jaclyn must soon cross. Puberty is a big one. Once it arrives, a girl with lupus can suffer flare-ups because of the hormonal changes in the body, Miller said.
Pregnancy and childbirth pose other dilemmas. Two of the medications used to treat lupus can cause birth defects. Miller has told Jaclyn that when she becomes sexually active, he will have to change her medications.
Two years ago, Jaclyn was on a campaign to spread the word about how lupus can sneak up on kids. She even stood beside Gov. Bill Richardson at the state Capitol holding up a sign to warn others.
Doctors can be fooled by lupus. It can hit the joints, the skin, the eyes, the lungs, the heart, the gastrointestinal tract a combination of organs, or simply one organ.
Primary care doctors may see a child with fevers, then joint problems or kidneys issues a whole series of perfectly explainable events and never consider lupus.
There is no single lab test that can determine whether a person has lupus, although certain signs help distinguish it from other diseases: rash over the cheeks, raised patches on the skin, severe reaction to sunlight, mouth ulcers, arthritis of the joints, inflammation of the heart or lungs, excessive protein in urine, seizures, anemia, a positive test for anti-nuclear antibodies and a positive test for immunological disorders.
Some signs prompt doctors to refer patients to a specialist right away.
"When someone starts to pee blood, it generally gets (the doctors) attention," Miller said.
A timely diagnosis is critical. Early treatment brings "pretty good outcomes," Miller said.
Miller has treated lupus patients as young as 6. He said his goal is to prevent every patient from being a chronically ill, bedridden child who is afraid to go outside. He wants them to feel like happy, healthy children who happen to have lupus.
The Gallegos family espouses that philosophy, too.
"The more active she is, the better she is," Michael said.
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