,pic Taekwondo team, a teenage Vivian I, who already led an active lifestyle, had ts set on vigorous training and break- 'l1!itall came to a painful halt when " d f~ti~e madeit astruggle 'fi): outines. She spent ',"',~ twQ yea "', .. ~~toid arthri- tis until discovering that a cousin had lupus. Not 10 if17,she learned that she, too, had developed the illness. "1t was scary," 30-year-old. "1had no idea exactly what lupus did to me, since it new disease."Allthese years later, researchers are still trying to learn everyt they can about this painful condition. What we do know is that lupus is a chronic autoimmune disea!>ein which a haywire immune system attacks the body, causing pain, inflammation and --- -- 76 LATINA,COM . APRIL 2010 PHOTOGRAPH BY IAN SPANIER -, II organ damage. It's not contagious, still unknown. Doctors believe that and the severity of symptoms can run some of us are predisposed to it, and from mild to severe depending on what triggers, such as pregnancy, certain COULD organ isbeing affected. "Lupus is a very medications, stress and UV rays (yup, heterogeneous condition," says Carlos the sun), can set it off. YOUHAVE Alonso, M.D., a rheumatologist who Unfortunately, when it comes specializes in diseases of joints and to prevention, there's not much we LUPUS? muscles at Mercy Hospital in Miami. can do. "Even if it's in your family, if RHEUMATOlOGISTS DIAGNOSE "If it affects the lungs or heart, the it's going to happen, it happens," Dr. the disease by identifying at person can have shortness of breath least four of the following 11 Alonso says. Once you experience criteria. Keep in mind that or chest pains. If she has kidney dis- unexplained and persistent symptoms, in addition. lupus patients have also experienced fever. hair loss, extreme fatigue and blue or ULUPUS CANAFFECTPRETIYMUCHANY white fingers when cold. For more info. visit lupus.org. ORGAN,SOIT'SDIFFERENT INEVERYPATIENT." 1 Butterfly-shapedrash ease, her legscan swell.If it affects the it's important to head to the doctor on cheeksandnose brain, she can get seizures. Lupus can as soon as possible to minimize risks affect pretty much any organ, so it's to any vital organs. "The earlier you f Rashin red.raised, different in every patient." At least 1.5 treat it, the less chances you'll have of disk-shapedpatches million Americans have lupus, 90 per- complications later on," he adds. In ;! Photosensitivity cent of whom are women. And while the two years Nagel spent with the 1 Oralulcers the disease is colorblind, it is much incorrect diagnosis of rheumatoid more common in women of color: arthritis, she developedlupus nephritis. § Arthritis we're two to three times more likely Her kidneyswere severelyaffected,and ~ Serositis (an to get the disease. treatment involvedchemotherapy and inflammationaround While genetics playa major role in dialysis, along with a diet of 14 pills the lungsor heart) developing lupus, its exact causes are a day. By the time she was 27, she'd . I Kidneydisorder suffered two strokes-after which the left side of her body was paralyzed for !! Seizuresor psychosis NUMBERS a month. ~ Blooddisorder Lupus treatments are as diverse DON'TLIE as the symptoms its patients carry. 10 Immunologicdisorder
Those with milder forms of the dis-
11 Abnormal ease are often prescribed medication antinuclear antibody such as steroids or anti-malarials, which treat inflammations, ulcers and joint pains. When steroids fail cific drug that will control the lupus to calm down an overactive immune but won't cause any harm." system, immunosuppressives might be Today, Nagel has taken on a differ- used to control the lupus. Then there's ent type of active lifestyle-by teach- 90% OFAMERICANSDIAGNOSED chemotherapy and, ifit comes down ing the Latino community about this WITH LUPUSARE WOMEN to it, organ transplants. According illness. Nagel serves as a volunteer for to Dr. Alonso, the options are fairly the Lupus Foundation of America and LATINAS ARE limited and there's been very little chats up senators and congressmen in terms of new treatments-until every year as an advocate. "My goal now. A drug called Benlysta is cur- is to create more awareness and tell 2m3 rently awaiting approval and would people what lupus is," she says, "and TIMES MORE LIKELY be the first new lupus medication in let them know that anyone can be TO DEVELOPLUPUS 50 years. But this isn't due to lack of affected." She's specifically trying to research. "It's a very difficult disease reach Latinos who either don't have to treat," Dr. Alonso explains. "If you health insurance or simply avoid the knock out the immune system, then doctor at all costs. "We tend to just you're making the patient more sus- take Tylenol for the pain," she says. 20% OF LUPUS PATIENTSWILL HAVEA PARENTOR SIBLINGWHOALREADY ceptible to infections and to cancer. "But that's making the disease worse HAS OR MAYDEVELOPTHE DISEASE That's why it's so hard to make a spe- in the long run."