Despite being a regular diagnosis on the popular medical drama, House, few of us know much about the lupus. Even if we know someone who has lupus, in all likelihood, we have no idea what the symptoms, causes, or treatments of the disease are. Lupus is a disease without a celebrity spokesperson, and while its impact is widespread in this country, awareness remains minimal.
The Lupus Foundation of America (LFA) estimates between 1.5 and 2 million Americans have Lupus. However, in a recent nationwide poll of 1000 adults conducted by LFA, 39 percent of those polled had only heard the name of the disease but didn’t know what it was, and 22 percent had never even heard of lupus.
An Autoimmune Disease Impacting the Lives of Over One Million Americans
By Julianne Hale
The Face of Lupus
If lupus had an American spokesperson, she would most likely be a woman. Over 90 percent of lupus sufferers are women. The disease is more common in African Americans, Latinos, Asians, and Native Americans than in Caucasians, so she would probably be a woman of color. She might be a mother, a grandmother, a teenager, a real estate broker, a writer, a waitress, or a stay-at-home mom. She was likely diagnosed between the ages of 15 and 45 when her disease manifested itself for the first time. Her lupus might have drastically changed her life or, given the broad spectrum of the severity of the disease, it may have had a minimal impact on her lifestyle.
Lupus: Questions & Answers
Dr. Elizabeth Turner, a board-certified Rheumatologist with University Rheumatology Associates in the Erlanger Medical Mall, treats many people with lupus. She sat down with HealthScope magazine to shed some light on this often misunderstood disease.
HealthScope (HS): Tell me a little bit about lupus.
Dr. Elizabeth Turner: Lupus is an autoimmune disease in which the body attacks itself. It is an inflammatory disease. It can affect various organs, including the skin, joints, lungs, heart, kidneys, blood, and brain, although it usually does not affect all of these in the same patient.
HS: What are the different types of lupus?
Dr. Turner: Discoid lupus is a form of lupus that may be limited to the skin only. Systemic lupus can affect the entire body as well as skin. Some patients with discoid lupus also have systemic lupus.
HS: How is lupus diagnosed?
Dr. Turner: Lupus is diagnosed based on the clinical presentation along with a positive lupus antibody (antinuclear antibody-ANA—present in almost all people with lupus). Other lab abnormalities may be present as well. According to the American College of Rheumatology’s criteria for lupus, the patient must have four manifestations out of eleven criteria to have a diagnosis of lupus. Criteria include abnormalities of various organ systems including the skin, joints, mucosa, renal, neurologic, hematologic, and immunologic, as well as various laboratory findings. As with all rules, however, there are exceptions.
HS: Many patients with lupus experience times when the disease is dormant and symptoms are minimal. What causes the disease to flare up?
Dr. Turner: We don’t really know what causes lupus. Flares can occur following exposure to sunlight, after surgery, during pregnancy, and postpartum. There is some speculation that stress may cause flares as well, but that has not been proven.
HS: What happens during a flare?
Dr. Turner: Depending on the patient’s manifestation of lupus, a typical flare can include joint inflammation, swelling and pain, skin rash, pleurisy (chest pain caused by inflammation), blood in the urine (if renal involvement), and neurologic manifestations, such as headaches, seizures, or psychosis. With flares, patients typically also experience fatigue and malaise. It is important to note that there is a broad spectrum of lupus. Some patients have a very mild disease with no major organ involvement while others have a more severe disease with renal involvement, lung involvement, or cardiac involvement. For the latter group, flares can be very severe and, in some cases, life threatening.
HS: How is lupus treated?
Dr. Turner: The disease is typically treated with medications that will calm down inflammation. The most commonly used drug in the treatment of lupus is Plaquenil (hydroxychloroquine), an anti-malarial. It is very effective in controlling inflammation and is used as mono therapy in milder disease and in combination therapy in more severe disease. We use NSAIDS (non-steroidal anti-inflammatory drugs) to control inflammation (Ibuprofen and Naproxen are examples of NSAIDS) if the patient does not have a contraindication such as renal disease. Corticosteroids such as prednisone are often required in short courses and sometimes for longer periods. The disease determines the dosage needs. More severe disease may require stronger immunosuppressant therapies such as Azathioprine (imuran) or methotrexate. Mycofenolate mofetil (brand name Cellcept) is used to treat severe kidney disease and occasionally other manifestations of lupus. For life threatening disease, Cyclophosphamide (Cytoxan) or Rituximab (Rituxan), a drug that attacks the B-cells, may be used.
HS: How important is proper nutrition for someone with lupus?
Dr. Turner: It is very important to eat a heart-healthy diet consisting of lots of leafy green vegetables, fresh fruits and lean meat.
HS: What happens during pregnancy to women with lupus?
Dr. Turner: Pregnant women with lupus commonly flare. It is recommended that patients be in remission for at least six months before becoming pregnant. The disease needs to be under control before becoming pregnant. Patients with lupus who become pregnant should be under the care of both a high risk OB and a rheumatologist.
HS: What is the prognosis for a woman with lupus?
Dr. Turner: The prognosis has improved over the last decade or so due to early detection, better treatment, and milder disease. There is a spectrum of lupus which can vary from mild disease to very severe. Typically the manifestations of lupus a patient presents with at the time of diagnosis will be what they keep. If a patient initially presents with joint pain, swelling, and a rash, then that’s what they will likely have long term. Patients who present with renal disease and organ involvement will require more aggressive treatment and likely will have a harder disease to control.
Because the symptoms are not always definitive and the treatments vary according to type, lupus continues to be a puzzling illness. For those who are diagnosed with lupus, finding effective medication and managing the stresses that seem to affect flare-ups offer keys to living with lupus rather than allowing lupus to rule your life. In all cases, patient education is a positive first step.
For more information on local support available in the Chattanooga area, one can attend the Lupus Support Group Meeting at Hamilton Place YMCA on the first Monday of each month from 6:00-8:00 p.m. in Community Service Room B, or the Downtown YMCA on the second Thursday of each month from 11:00 a.m.-1:00 p.m.in Community Room #1. The 2008 Walk with Us to Cure Lupus will take place October 4 at the Tennessee Riverpark on Amnicola. Registration begins at 9:00 a.m. and the walk starts at 10:00 a.m. For more information, visit http://walk.lupusresearch.org.
Julianne Hale and her family reside in Cleveland. She earned a Bachelor of Science degree from Illinois State University and then an MBA from the University of Phoenix. Julianne is a member of the Chattanooga Writers Guild, is married, and has two children.
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